Any cures/medication for PPPD??

Jim Cliff Chuck Hinz here. I have many of the symptoms you

have with pppd . Had a significant vertigo attack a year ago and it nevered resolved itself just went into pppd for the past year. all test negative 

i tooted predisone for an afib abletion and noticed some improvements 

with the dizziness. Syndrome seems to improve in the PM AND EVENING

when the heart is around 70 BPM. Not so good in the afternoons.

Tried three different ssri's no luck. I was thinking about  taking predisone low dosage. Fatigue is what I am trying to deal with today LOL.

I cant't lie straight back have to sleep on my side I could go on and

on.

 

Chuck Look up CSF. One mention of cause of feeling lielwe feel is due top that problem.

One of the causes  is listed as pain meds.

I had ttwo operations ion bowel - only have 8 inches of colon left- and last one left me with perpetual pain in side. Take 10 to 20mg of oxycodone most days to ease that. Found that ever since I started having this PPPD or whatever it is, have found that pain meds lessen the effects of dizziness.

Have never used drugs opoids in my life and asked doc if I am addicted and if I am feeling better because drug crave is being served or if it is in fact relieving syptoms of this horrible daily feeling.

Hate to even get up in the morning because I onlw that foogy feeling is going to come on about 15 mins. after getting in upright position.

There is a Dr. Roach that writes column that appears in paper and he described the feeliong of CSF and they sure sound like PPPS!.

Hope everything gets better for everyone wroting here about being plagued with this crap - whatever it is.

 

My real grandfather was a partner in making my mother a b*****d child.. He was from Phila, married and had 3 sons and  a daughter. Mother born in 1908 He was about 33 at the time. Wife's maiden name was - I believe Kolb.

Joined Ancestry.com to track family tree to see if I could find any half brothers, sisters, grandchildren from this mad to see if they knew if he had a med problem like this and if so if they ever found out what it was. No luck in finding any answers yet but believe there might be chance that he was afflicted with something 'cause my mother had dizzy spells, headaces all the time and my brother had vertigo real bad. So, maybe there is a connection.

Anyone out there that has a lead to grandchildren of Samuel H. Ritch that was creeping around back in the early 1900's. lived in Phila, was a salesman for an electric company that was stationed in Phila back then - let me know-PLEASE 

Did Johns Hopkins diagnose PPPD?  I am 3.5 years out and have some sensations still. Never told it is PPPD, even though that is what I presume, but, I do still have a heavy head sensation at times and a feeling of fullness or stuffiness but, no congestion. Barometric pressure changes bother me and it takes me much longer to get over the effect of sinus issues. 

Always in the back of my mind is a recurrence of my initial symptoms when I feel almost any sensation. That can cause a panic and that creates added symptoms. 

It’s a terrible condition if you have residual damage to the vestibular system. Did you have a VNG to determine that there is in fact residual damage to one side?

I had a VNG years ago, but it was negative. All of my hearing and inner ear tests have been normal. I just saw a neuro-otologist/vestibular neurologist in September. Based on symptoms I have and testing that he did, he diagnosed PPPD. Visits to the ER have been pointless because the docs always prescribe vertigo meds that NEVER work. I'm going to add the other two components (meds and VRT) and pray that I experience relief.

I hope that you get relief as well.

Danielle,

There should be a drug strong enough and enough of it to put you at ease in a close space.

I have had many MRI's and there is nothing to it for most.

Close your eyes before they slide you in to the tube. If you would open your eyes while in there you would find that there is a lot more space than you would imagine.

Keep your eyes closed, don't even open them for a quick peek if curiosity gets the best of you, Tell them to play the music you like most (miost of these places have the abailuity to pipe music or whatever you want in)  and if it helps, have them play it loud. You can talk to the docs or techs anytime while you are in there so you can say "LOUDER" or "A LITTLE SOFTER" and they will probably ask you from time to time just how you are doing.

I hope these tips from an old vet helps and I understand the closeness. I have been in some pretty tight spots while doing certain things around he house, especially the attic with my head in the narrowest spots, spraying insect killer and soon realizing it was also going to kill me if I didn't get the hell out of there and fast! been there-done that!

Please give it a try you have nothing to lose and all to gain by maybe finding something that is curable and causing your discomfort.

Let me  know if you go for it, and how you made out. Good Luck. Jim

I hope that this PPPD has not become a "go to disease" when they have no other answers.

Could they go just a little further and see if it is something with the similar symptoms?

I have been all over the web and am seeing more and more people with this diagnosis but at the same time I am seeing a lot of other problems that resemble the symptoms or are the same but are named other probems. One that sticks in mind is CFS or something like that.

It is a loss of the fluid that surrounds the brain and has the exact same symptoms but most times can not be seen on an MRI.

The only way it is really detectable is with a spinal tap.

I had one years ago but at that time it was a way to not have me feel any pain while they cut my gut open and removed a lot of colon and bowel. The guy that did the procedure must have been a novice 'cause he explained nothing while he was doing it, it hurt like a son of a b***h, and I let him kniow to which he replied "Don't move!" To which I replied "get up here, let me stick that needle in to your spine and see how still you stay!"

The site leaked fluid, even after I was  home and I could not lift my head without experiencing a terrific headache. One pain pill after another was prescribed until finally onme took care of the problem.

The one that I recently  had was a breeze, no discomfort to speak of and the tech was explaining all that she was doing all the while it was taking place. Went home and had no headaches. Sore spot on my spne for about 3 days but that was it.

The fluid was examined and there was not CFS or whatever they cal the problem when the flid is leaking from around you brain.

So, like I said, there are many other things that cause the same sensations that most of us that "have" PPPD and if you go as far as to have to have a spinal I would say do it-there is not as much discomfort if it is done right.

Look up the symptoms and you will find many other similar symptoms from many different problems.

I think that one of the causes of the CFS could be a result from abusing drugs. Of course at the same time the excessive use of drugs is not smart in any case and can cause many other problems and most of the time you will end up in the corner rocking back and forth while in a fetal position at the funny farm while attendants look in on you thru a tiny hole in the door or end up dead. Which in some cases is the better solution! Jim

 

How long have you been experiencing symptoms?

It became really bothersome in early May. I haven't been to work since then. It has gotten progressively worse because I've seen doctor after doctor. They kept sending me for testing to rule out MS. While at Johns Hopkins, I was referred to the doc that told me it was PPPD. My local neurologist then recommended I see an MS specialist. who doesn't believe I have MS.

Hi Jim.

I had a spinal tap in late August. All results weren't available when sent to my local neuro. Since then, a John's Hopkins specialist diagnosed PPPD. Two weeks later, an MS specialist examined me. Didnt think it was MS but wanted me to have yet another brain MRI.

I would insist that all results from the tap be made available to all necessary persons.

If you are like me you will have any test done that they ask of me. All of us that have these same or similar symptoms really would like to know what is causing it and what will alleviate them if not remove them completely.

I would like all that have this - whatever it is- to say when they started to feel the symptoms no matter  how mild, if they came on gradually or started full force suddenly, if they know what caused ti to happen, if any have a record of a stroke about the same time this started. Any other incidents that they feel pertinent to the onset of symptoms.

I remembered that just a short time before the symptoms started - gradually and getting stronger as the years went by - I had an attack in a dept store that I would say was very similar to the foggy feeling that comes with the symptoms that some state are the same as they experience with PPPD.

An MRI to investigate the PPPD symptoms revealed a small stroke that took place sometime in the past and I am betting that is what the sensation was that that I experienced in the store while Xmas  shopping.

For about 10 to 15 minutes, when it happened, I stood in place. I seemed very disorientated, didn't faint or fall down. No one approached me and asked if I was feeling OK so I am assuming that no one saw me in this state and/or that I did or did not have an expression on my face that revealed to anyone that I was in some kind of stupor.

After the above stated time I returned to normal, didn't have any after effects that I was aware of andf continued with my shopping.

A small amount of time passed until I started having spells of dizziness/foggy feeling in my head.

The room didn't spin. I was not any worse for being in the presents of any moving crowd, spinning rides, or any other stimuli that would be accepted as a cause for the sensation that would normally, I guess, set off the senses of someone with vertigo or some similar complaint.

As time went on the spells seemed to increase in intensity, more frequently, more restricting in what could do socially due to worry if I was going to trip, fall or some other accident that would be caused by the simplest action that would not effect the ordinary person.

Most of all they just became a pain in the ass and I found myself sitting more frequently when doing chores that required standing and moving as I needed a break from the attacks.

I don't know if the attacks and the copping with them sapped my strength more readily but I found that I tired more easily and it took me  3- 4 - 5 times as long to do as compared to my stamina befiore I started to have these sensations.

The same with sleep. I don't know if the disease made me more apt to seek a chance to sleep or if sleep was an escape from the unpleasant things I was feeling.

As I have said in previous postings, I have tried everything from stopping all but them most essential meds, to changing the water that I drink.

Sometimes I thought that I had done a certain thing, tried a certain combination of meds, done or not done certain things in a particular order that had made me feel much better for the next day(s) only to find that if I continued what I thought was the magic elixir did not work if continued.

Some have said it could  be all in your head. Maybe so but I know for certain that when the dizziness comes on after doing a certain thing over and over that it is not my imagination and the pain and discomfort is real.

The doc at JH sent a report and in it listed some of the causes that bring this on in the very beginning. One of those was a sudden disturbing incident.

I am not aware of any thing that happened about that time that would put it under this category of triggers and thinking hard on it, I remember many disturbing incidents in my life and at many different stages of my life that came and went and never left me in a state tin which I find myseklf now and for the last 5 years.

Anyone that has found or finds a magic potion - PLEAS let me know about it and I promise to do the same if I find such a cure. Jim

I believe that there is a problem in my ears that has not been diagnosed or discovered. There has to be some medical reason and not mental reason for this to come on for no reason whatsoever and stay this long. The problem is there. It only remains for the medical world to find out that cause and the cure.

Maybe, if someone that has been diagnosed with these symptoms, were to die and donate their brain to science and that brain were to be examined in every way possible, a cure would be found that could be cured by an operation.

I would be the first to sign up to have my head cut opened. I have already made my wishes known that I wish to have my brain studies for purposes of   finding a solution to this problem and this problem only. If after they find it, they could throw my brain to the hyenas for all I care.

Just name the cure after me is all I ask!

If I were the one granting you workers compensation, it would be granted "cause I know how hard it is to do any chore without feeling worse and continuing to feel that way until you can sit or lay down.

Have you applied? If you do and are refused I would hire an attorney. I know, being a type A personality how hard it is to go about not feeling useful. When you feel a little better your first thought is that it is a good time to get up and tend to that chore that you have been meaning to get at - only to find that standing - you just want to sit down once again.

Hope you find relief. Believe me- I know! Jim

I find that sitting and occupying myself with reading, working puzzles, TV or some other task that requires my full concentration eases the sensations that come with PPPD BUT I must be sitting or laying down. Standing makes it impossible to escape!

So I just read the whole thread, and I won’t list all of my symptoms because they are all the same as everyone’s.  I have been feeling like this almost every day for 5 years.  

I was diagnosed with chronic subjective dizziness by Mayo Clinic 2 years ago.  They recommended seeing a psychiatrist, and I didn’t go and didn’t go to a single doc in 2 years...because frankly I was tired of hearing it’s anxiety.  I am not a Type A person, no OCD, no anxiety or depression.  I SHOULD be depressed after 5 years of this!  But I am not.

Today I went back to Mayo Clinic insisting something has to be wrong w my inner ear.  They did an eval in the office and said again...my inner ear is fine.  Now they are calling it PPPD.  Which is chronic sub. Dizziness with a new name.   I made the appt with the psychiatrist because I felt pressured into it.

But I am really posting to find out if anyone has gone through vestibular therapy?!   That’s what I want to start.  After 5 years, enough is enough.

I take 80mg of propranolol yo try to relive head pressure. Plus 10mg of Amtriptyline because I wanted to TRY something.  After a year I feel just as dizzy as I did before.  

Any ideas, suggestions, or just plain venting would help.  . 

I am a 42 year old teacher and I still manage to work 11 hour days.  I honestly don’t know how I do it.

Also, does anyone’s EYES bother them? I feel light sensitive every day, feel pressure, plus have chronic headaches.  

Hi D

had to register - never done this before - after reading yr post just to try and assist you.  I can  Sympathise cos you sound alot like me symptom wise.  I’m not a medical person, ‘just’ a fellow sufferer. 

A full history might make things clearer, a detailed symptom list in some time line order but have your thought about MIGRAINE?  

After 10 yrs of symptoms and several incorrect diagnoses, my condition turned from episodic to chronic and in October 2015 a neurologist diagnosed migraine associated vertigo, MAV (which i understand has very similar symptoms to CSD/PPPD) and can indeed progress from MAV to PPPD.  At that point I’d never had a headache or an aura with the attacks, these came later.

EYES: yes, light sensitivity tends to come from migraine.  A migraine specialist seen early this year told me my whole system had become hypersensitive, hence the light sensitivity.  Light sensitivity is a symptom of Central Sensidisation, migraine affects the central nervous system. I found light sensitivity was pretty much the last symptom to develop in my case.

It must be very difficult to diagnose these illnesses which cause dizziness.  Symptoms are very similar and some illnesses seem to overlap how do you ever know where one stops and the next begins. I think the key to effective treatment is getting a correct diagnosis in the first place so, if I were you, I would look at your symptoms from the migraine angle.  Remember there are ‘silent’ headache-free migraines where dizziness replaces the head pain.

From what i have discovered I’m a typical MAV case.  Always car sick as a child, i remember having what was then called ‘sick’ headaches occasionally into early teens. I actually stopped eating chocolate completely and have never gone back to it because I was told it might be the cause.  All through my adult ‘fertile’ years no migraines, just occasional ordinary headaches then my first episode of vertigo occurred as I hit menopause. Migraine seems very hormone linked.   Any of this sounds familiar you might be on right track.  If not, you have lost nothing by thinking outside the box.

Vestibular rehab:  do think very carefully about that.  I did VRT intensely, ardously and enthusiastically for 6 months following one incorrect diagnosis. It exhausted me.  After 5-6 weeks I thought it was helping and I pushed on and on with it.  After 6 months I collapsed into bed with a new attack.  I cannot day the VRT caused it but I feel it certainly exacerbated it.  I have seen read scientific papers which stated that migraine must be under control and stablised before attempting VRTand that migraineurs tend not to respond as readily as others to VRT.   Might be good idea to look into migraine possibilty or eliminate it entirely before ....??  

Good luck.  Hope you soon get some progress with this terrible affliction. You are not alone.  Any help I can give .. I’m around.

 

Hi D

missed a bit.

just in case you’re  put off by being told yr current meds (which are both used to treat MAV regularly) should control MAV if you’ve got that, so it can’t be that. ... if you follow me .....  could well be the doses aren’t high enough to effect control.

Thanks for your input. I will try thinking along the lines of the migraine theory and ask my doctor about any possible med, exam, etc in to this cause.

I know that my brother and mother both suffered from migraine headaches that really knocked them flat on their butts. I, on the other hand have never really been bothered with headaches of any kind that amounted to anything and required medical exam.

I wrote in one segment on here, and I don't know if it was in any of my posts that you read, that about one time, I believe it was around Christmas 2012 while shopping that I was hit with some kind of attack that I had never experienced before.

All of a sudden I became very dizzy and disorientated while in the dept, store. I didn't know what it was and so decided to just stand still in place until it either started to get worse or went away.

After about what seemed like about 15 minutes I returned to normal and went ion with my shopping.

It was later in 2013 that I started to experience the dizziness,foggy feeling, like the thingsa that were going on around me were like watching a movie - I was there, but not entirely. That sensation has continued to this day which is well going on 6 years. Some days are better than others and when it does return full blast it comes back with a vengeance.

I don't know if the meds that I take trying to shake it cause it or if it is part of the PPPD sympoms but at times all I want to do is sleep.

The only thing that I have found helps is a 10mg's of Oxycodone taken about 5 or 6 in the morning and then going back to bed to get up at about my regular time of 8 or 9. If the symptoms return stronger than normally I take another 10mg about 5 to 6 hours later.

I sense that this is on the left side of my brain and effects my left eye and its vision most of the time.

After I remembered the dept. store attack I mentioned it to my pcp and he had the next MRI pay close attention and sure enough there was indication of a slight storke at some time but they couldn't say when it was. I am opting for that time in the store.

I often wondered about the sensitivity to light but my optician never said anything about it but on my next exam I am going to have a conversation about with him. In the meantime I am going to try using sunglasses around the house and when I go outside and see if that helps at all. I never was one to wear sunglasses even when outside and most other people were wearing them.

My PCOP put me on depression meds as I was, and I knew I was, very depressed most of the time. Who wouldn't be with this horrible condition that no one really seems to know what causes it or how to alleviate or cure.

The first couple of days I did fine on it and I found that I had returned to my old talkative self but eventually I returned to my old PPPD self and found that they did nothing but make me sleep. I stopped taking his prescribed dose and cut back to 1 or 2 a day most of the time when I do take them.

I have a friend that has more problems than any human should have and he was recently put on Flomax for an enlarged prostate. Thank goodness his wife is a nurse and was able to do the right things when she fond him passed out on the kitchen floor and then again about 3 in the morning on the bathroom floor. it was caused by the Flomax which states that lightheadedness and or dizziness is a possible side effect of that med. Him doc told him to take it at night before going to bed and there have been no more episodes of passing out - at least none of which she has told to me.

I have been talking Flomax, according to our records at least since 2011. I have tried to cut back since she remarked about that incident, but have not noticed any change in the reduced dosage.  Not being a male you don't know what discomfort and might I add patience - there is in having problems with that!

I am going to try all of the leads that you have put me on to. And, let's both of us that the medical and research field soon gets word of how many people suffer from this and what a pain ion the butt is-even causing some people to not be able to work because of the PPPD - and starts to give it the serious investigation that it certainly demands.

If I find any help in getting rid of this or reducing the discomfort that comes with it, I will let you know

Till then take care and stay in touch in the event of any miracles. Jim

Hi Jim

well, a family history of migraine could be significant. It’s certainly worth asking the question.  Good luck with your search.

your event in the supermarket might  well have been a stroke, I’ve a sister-in-law who had an identical experience a few years back that proved a mini-stroke. Guess that could have been the traumatic event that started the PPPD events.

with regard to light sensitivity. That’s often migraine-related.  Whatever you do, please don’t start wearing sunglasses indoors. Your eyes will quickly adapt and you will become even more sensitive to light than before. It’s possible to buy speciallly tinted lens to wear indoors and there are special migraine spectacles you can buy but I would make sure you have migraine or not first.

Alot of medication lists dizziness, vertigo, headaches as symptoms and I’ve read that the more different meds one is taking, the higher the chances of side effects.  Oh would that we didn’t have to take any at all. All the best, Helen

Thanks again, Helen, for all your helpful info. I didn't know that, although I should have thought of the fact that my eyes would become more sensitive to night the more I wore sunglasses.

We have a Chinese, or at least I know he is Asian, gentleman that has a special pharmacy next to my doctor's office. He makes up special formulas of meds and I asked him if he could take a look at all the meds I take and after analysis tell me what would interact with what other drug(s) and be the most likely for any of the symptoms that this supposedly PPPD is the cause of.

I have not got an appointment with my PCP as of now, but with this new info that you have supplied me with I will be making one to try to get an answer to this light sensitivity and headache thing that you told me about. I will keep you posted with anything new that I learn.

If anything you have told me results in even a slight change for the better, I owe you what is rest of my life. Not mush I fear as I am approaching 80. Believe me the outer shell looks good and you would never think that I am that old to look at me but inside I have a zillion things going on that all started with UC resulting in 2 operations and 8 inches of colon left when I was 26. The first at that age and the second when in '95 it was found that the re-sectioning site had developed adhesions that were choking what was left of the original colon and had to go along with a few more inches of colon. Kidney deficiency of magnesiun, a touch of COPD, pre-diabetic, Gout, (that only rarely acts up) essential tremor (that is kept under control by the combination BP meds that I take.

In spite of it all my doctor said something that I didn't understand and he said that if he had to chose the most dependable person to get a task done from 100 me, he would pick me. Flattery? Who knows but it makes me feel like I have some worth in these old bones. He should know what he is talking about though 'cause he was a Capt. in special forces and was among the few outfits that made jumps in Nam. Got shot several times while hung up in a treeand said to himself that these guys were trying to kill him. To which I remarked "well, what the hell did you expect from them, that was their job, you weren't on a visit to Disney!"

Thanks again, Jim

Thank you for your reply, Helen!  You might be onto something as I have suffered from migraines for 20 years.  The neurologist at Mayo felt that I did not have MAV but I see a doc that specializes in migraines, and she believes all the head pressure and light sensitive is a migraine, even without the pain.  I just made an appt to go back to her in January.  Maybe she can change my meds.  Any drug in particular you would recommend?  She has me on 80 mg of proprananol which does not seem to be working.  And she wanted me to take 30 mg of amptriptline or nortriptyline but I can’t seem to tolerate either more than 10mg because all I do is sleep when I raise the dosage.   I have tried 10 in the AMand 10 at night, and I think I am even more dizzy when I take in the morning.  Is Topamax a good one?  She recommended that first, but I am a math teacher and need to be very alert and clear in my thinking all day!  I was afraid to try it.  Maybe it’s time.   

Hi Deirdre

must be very difficult for the medics to sort these vestibular conditions out.  All seem very similar symptoms. Sometimes too when they take histories the emphasis must shift, depending on question/tone of same and although response is truthful I’m sure it’s easy to not remember/misremember things and it’s all so subjective anyway and one is not sure what they are looking for, what’s relevant or not.  I had misdiagnoses with ENT several times and then the first, and he was highly experienced and renoun, neurologist came up with migraine associated dizziness which came as a surprise to me after so long, based on very minimal info. I’d gone to him with another condition altogether which took up most of the appointment time so he was very clever chap I thought.  However it took another, migraine specialist, neurologist looking specifically at the condition to sort the finer detail. So good on you for making another appt with yr specialist.  I agree head pressure, particularly around the back of the skull, and light sensitivity smacks of migraine. One ENT Consultant told me head pressure was in no way related to ear problems and associated dizziness.  Pity he didn’t tell me it might be Migraine and to go find neurologist but he didn’t.

You are like me very sensitive to meds.  Migraine sufferers often are.  The only preventative meds I’ve tried are betablockers, two, the first gave me chronic indigestion, the second was propranolol which I am currently taking 180 mg in  three equal doses through the day.  This is quick release, not LA. 

Maybe you shd try Topamax.  I’ve heard it’s good for MAV if the medics decide you have got it. The specialist I saw suggested, I was already on propranolol, to up the dosage (from 130 mg) and could add in Amitriptaline and if that didn’t do it, come off the above completely (thought fills me with horror) and try sodium valproate which is an epilepsy med, similar I suppose, to Topamax.  Side effects however don’t look good, for a maths teacher which might be a bit of a blow.

the only other thing she recommended with exercise. To keep fit and walk (distanceI think she meant) every day, and continue with my Tai Chi.

Helen

 

Helen, i read on a site that was all about PPPD and it said that Tai Chi and especially PT do no good unless started at the onset of PPPD. That it may help all the while doing it when you have had PPPD for awhile but as soon as the exercise is stopped the syptoms return. Jim

Deirdre, i received a meg from Patient site that said you left msg for me but I can't seem to find it. Jim

Hi Jim, 

I think If you scroll up in the thread you can see my message.  You were the last one to write so I think I replied to you but for everyone to see.  I am just a fellow PPPD sufferer and wanted to join in on the discussion for some help!

Helen- what meds are you taking for migraine?

Hi deirdre

just happened to drop by and saw yr note to me on an ansa to jim.  Wondering now if you picked up my last reply to yours.  This system does not seem to sort ‘oldest latest’ even when requested i am finding it seems all a bit of a jumble time-wise.  

I take propranolol for migraine prevention, ie to stop the constant dizzies in my case and incidentally yesterday was my best day ever balance-wise and that’s after virtually 8 months on upped dose (pls see my previous message to you).

I don’t take anything else at all for anything.  Since I’ve been taking propranolol until 2 weeks ago I hadn’t had a full blown attack for 2 yrs, ‘just’ the constant dizzies 24/7.  Read the dizzies are in place of the head pressure/migraine headache.  Have also read the constant dizzies are because one is having a migraine attack that never stopped so if that’s true I’ve just had a 2 yr long migraine which then escalated into another one!  No idea which, if either, is true.

Hope I’ve answered yr questions. Pls check out my previous. Hope you can find it!

If you want to be sure I get back to you promptly pls reply direct then I shd get an email notification.  It was only pure chance I ‘visited’ this site today.

Helen

Hi Helen,

Yes, I am pretty sure I saw all of your responses.  What is your dosage for proprananol?   I am at 80mg, don’t think my doc wanted to increase that last time.  

So, I went to a new chiro today.  He was a soft spoke, smart, great guy.  He’s very intrigued with my story.  In his words, “He’s seen necks worse than mine, but not many.”   He said I have a lot of issues with my C1-2 and axis.  He doesn’t do the neck cracking or anything like that...but seems to think my dizziness could definitely be related to my messed up neck.  I know my neck has been bad for years.  Got an MRI and they didn’t see anything that would cause dizziness.  Just curious, do you have neck issues?     My neck issues could be causing my headaches?  Just a thought.

Hi Dierdre

Think you might have missed one cos I did list my propranolol dosage but not to worry, it’s no secret.  Have been taking 180 mg for nearly 8 months and continuing.  I was on 130 mg for a year before that.  With MAV I think the aim is the maximum allowed or maximum tolerated (and hopefully) this amount will control it effectively, and then continue for 1-2 yrs or maybe more.  I’m on quick release, not long acting which I read isn’t as powerful, mg for mg.  it can depend on how much medics are happy for you to take. Very low doses seem to control/stop classic migraine but I think chronic cases ie where there’s constant dizziness or whatever, much more is needed.  I know I’m much better on 180mg than I was on 130 mg, much much better.  I have read that with MAV one needs the most effective dose for maybe 9 months to achieve a 70% improvement.  Obviously there are other (possibly not obvious to us even) factors involved but I think I’m 70% better now and just short of 8 months on 180 mg.

chiro.  I suffered with bad back pain many yrs ago, when I was young and my mother’s then GP told me to always steer clear of chiros, and I have.  I have recently read of dizzy patients being made worse by them and even non-dizzy individuals developing persistent dizziness caused by chiros!  If you trust yr chiro and are happy, go ahead.  I’m sceptical because I’ve heard some chiros talking a load of nonsense.  One told my sister-in-law her spine was twisted and he could straighten it out for her in a few expensive sessions.  She is 75 yrs old.

I would have thought the MRI scan would have shown up any problems existing  in yr neck provided they did scan it.  It should be a reliable source of info.

Neck issues?  Do I have neck issues. Certainly do.  I complained to my husband daily for ever since I started having balance issues about a stiff neck.  I get a really tight/stiff neck before a migraine attack and during,  and can wake up some mornings feeling as if my neck has been bent doubleor twisted all night long but I don’t think there’s anything wrong with my neck.  Being dizzy all the time is a symptom of a balance disorder.  A balance disorder throws your whole body off of kilter.  You don’t use your body as it was designed to be used and therefore ‘bits’ get tense and stiff and ache. Not turning your head because it makes you dizzy can make your neck ache and being tense, and having tense muscles makes it worse and tight muscles/stiff neck can probably cause headaches so Yes, yr neck issues could cause yr headaches and maybe yr dizziness causes yr neck issues.

Helen

Hi Dierdre

Further thoughts re bad necks.  Do you suffer worse dizziness following/during head turning, ie to converse with somebody when walking or turning from one side to the other talking at the meal table?  I do.  MAVers d,as do most people with balance problems.  A friend who has never fully recovered following labyrinithis always does.  Apparently PPPD sufferers don’t.

PPPD is a type of  Functional Dizziness and there’s lots of info about it on the web.  A Matthew G Whalley, a pyschologist from Berkshire UK NHS together with an audiologist, Debbie Caine have produced a scientific paper on it that’s very informative. I have also read some stuff by a neurologist, Jon Stone from Scotland, that’s designed as self-help.

Some people prefer not to research their own conditions.  I didn’t used to but I’ve found  not many medics have detailed knowledge of PPPD, MAV, light sensitivity and other such conditions and I think it makes it easier to understand the ‘expert’ once you do get to see them.  It’s not all so ‘new’ and therefore you can ultimately gain more from the appt.

Helen

Helen, What is this MAV you mention? If it is about migraine headaches There was a article in our local paper today about two new drugs that are given by injection about every month.

One drug is call erunumab (er-EN-yoo-mab and the other is fremanezumab (frem-uh-NEZZ-yoo-mab.

The article is too  long to go in to here but if you are interested in it contact me at and I will try to send it to you by e-mail.

I suspect that what they have been telling me is PPPD is actually migraine headaches. I wrapped Xmas presents yesterday and after standing for such a long time and wrapping I felt like hell. I felt that way again to day even after a long nights sleep. I finally took two Tylenol Extra Strength and I feel better - not cured or like I want to go out and party but better. Jim

Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

Thanks for the offer Jim, very kind but I did see an article about the new migraine drugs.  They might be available next year it seems.  What names! Who thinks them up.  Hardly memorable, are they.  No idea yet whether they would be of use in cases of migraine variants which is what MAV is but can always hope.

MAV stands for Migraine Associated Vertigo, aka Migraine Associated Dizziness, or migrainous vertigo.  It’s usually ‘silent’ migraine, often lacking the headache component which makes diagnosis difficult and usually much delayed.  I had my first attack in November 2003 and finally got a diagnosis in October 2015!   Not long, if you it quickly as they say.  Symptoms are pretty similar to PPPD and indeed I’ve read MAV can morph into PPPD as time goes by.  There’s alot about it on the internet if you want more info.  Helen

Hi Jim,

I found this thread tonight and I have been dizzy for 22 years 24/7. I was really bad this summer. Couldn't stand it any longer, so after being misdiagnosed all these years with bppv, I did my own research and came across vestibular migraine. My brother has a history of migraine and I was having "sinus" headaches all the time and constant dizziness so I came to the conclusion mine was VM. I have all the symptoms of VM. Some people don't have migraines but just dizziness and sinus headaches they say are many times really migraine. I also have a history of UC, but after I added resistant starch to my daily diet through potatoes and sweet potatoes, my UC symptoms completely vanished after 2 weeks. Makes me wonder if the dizziness is an immune issue of some kind or a methylation issue. I dont take any meds for either condition, not even any advil. Anyway, I started to do a low histamine diet and after six months of strict adherence and extremely clean eating I am feeling a lot better, almost normal. I used to have zero good days, but now I have mostly good days with only a few off days if I eat something bad that i didnt know affected me. Did you ever hear of the diet? In it you avoid histamines, tyramine, sulfites, nitrates, soy, msg, gmo foods, etc. There are varying lists on the internet, some more accurate than others, but it is trial and error of some of the foods. For me i feel the dizziness from what i eat the next day. So i keep a journal of everything i eat and look back to discover triggers. Just thought to share this with you as it has helped me a lot.

Thanks Mary, will tell my PCP that has tried to works on this with me. He doesn't believe that after 6 years it is PPPD just as I feel after all this time and trial and no improvement. Jim

26 yr old male here. Never smoked, never drank much alcohol, not the unhealthiest lifestyle but not exactly

the diet of a saint (up until recently). 

Bear with me...

Similar(ish) symptoms to most people on this thread, although I’m new to this as symptoms have been going on for just past the 2month mark now.

I had a bit of a funny episode end of Oct, sat on the sofa when all of a sudden, I felt really spaced out and ‘detached’ ‘lightheaded’ and my heart rate went up due to me having a ‘mini panic attack’ as I liked to call it, which lasted roughly 60seconds. I went to the doctors that morning as I felt weird still and the DR said it could be ‘vertigo’ and prescribed me vertigo sickness tablets which I refused to get as I didn’t feel sick and I doubted at the time it was vertigo. I had blood tests which came back ‘fine’ as she put it on the phone.

Anyway,  after a week of feeling a bit fuzzy I had another similar episode out and about which hit me hard. Spaced out, TV kind of vision followed by shakiness and anxiety. The next few days were awful. I felt constantly worried, dry mouth (I’m talking 3 litres of water in an hour kinda dry!) shakiness, pale and all over shock symptoms. All because I was worried about the episode, why it happened? Will it happen again? Because of this i didn’t sleep well which made it worse. Anyway, the anxiety subsided after a week and I was left with 3 weeks of unsettled sleep.

It’s worth mentioning at this point that I did have the Flu jab 2 days before the first episode happened and have spoke to two doctors about it who dismiss it and say that my immune system on the blood test is normal and healthy. Maybe I’m just cherry picking for things.

Since this has happened though, to this day I’ve had this brain fog, cotton wool head, fuzzy, dream like feeling. I feel tired all the time, muscle twitches in the lower back of my head, ears feel a bit poppy with slight hissing style tinnitus and just generally a bit detached.

In terms of worrying about it I’m more or less past that stage. I just deal with it. My diet is impeccable, no caffiene/alcohol/sodas, lots of water, clean meat, fruit, veg and I jog 30mins every morning. My sleep is a lot better, a nice 7-8hrs a night. It’s still there.

Ive has blood tests (as mentioned above) an MRI 4 weeks ago and haven’t heard anything yet (10 week wait apparently) I’ve also got  An ENT booked in Feb. So eagerly waiting here. 

I’m not dizzy dizzy, I can function, no bodily aches or pains I can move around, jog carry on but I just feel a bit slow off the mark,  fuzzy and just head fatigue. It’s odd. 

I have your exact symptoms. Fullness In head and ears. Room is constantly swaying, it never goes away. Always dizzy. I feel as if I’m detached from reality most times. I have two daughters and this came about after I ran and came to a stop pretty fast. There was a man around the corner who I didn’t see until I turned and possibly sent me into possibly a panic attack. They have done mri for tumors. Checked spinal fluid build up all fine. I have begged to see an ent so I can discuss all of these symptoms with him. I have every symptom that associates with pppd. I’m going to try and get this cured, only 25 with two beautiful daughters. The hardest thing I have ever dealt with. Have you gotten any relief yet?

it sounds like the PPPD that I was diagnosed with at John Hopkins.

Do whatever you can to take care of it in the early stages,  because if my experiences are anything to go by after 5 years of this, it will get worse before, if ever , it gets better.

Get a DVD of Tai Chi and do it faithfully at least once a day. Try depression pills because yo will get depressed after it goes on and on and you have tried everything.

I contacted the neurologist at JH, who treated me back in 2015 said that here is a Dr. Jeffery Staab at Mayo Clinic that is considered a to be on top of this condition as much or more than anyone else.

So, if you can get an apt with him, get there as soon as he as time to see you. This is nothing to screw with.

if I was not more afraid of dying than I am tired of living like this, I would have checked out long ago. it's only the hope that tomorrow there will be a gigantic break through  on this or it will go as strangely as it came.

I am going to try oxygen next but doc says, after putting one of those oxygen things on my finger that my levels are fine. May be fine in my finger but screwed up in my head.

Can't go anywhere 'cause I don't know if I am going to feel good enough to enjoy.

Reluctant to get out of bed as I know laying there is as good as I am going to feel all day and can't wait to get to bed at night 'cause sitting or laying is only time I find relief.

Feel bad for my wife as she has to carry most of the load 'cause I don't feel up to doing much. have to really push yourself to get thru even the lightest of chores.

Hope you find relief and if you do, let the rest of us know as most of us are going thru hell every day.

Good luck, Jim

Nothing that works for good. Have an order  in for Boost Oxygen as for some reason I think that might give relief, But, PCP says, after measuring levels with one of those finger attachments that I am O.K. in the field.

Wish I could tell you that I have found something that gives even the slightest and/or short lived relief, but haven't

If oxygen does the trick will definitely report it on this site as I know there are hundreds, if not thousands, out there that are suffering with this without much of an answer from the medical field.

So, if you are a neurologist and know any thing that will give even the shortest of relief-PLEASE, let us know!

There is a Helen on this site that says she has a form of migraine that presents itself as dizziness instead of headaches. Believe that doc prescribed Propranolol. Can't figure that as I use that for BP and Essential Tremor relief.

There is a CSF which is some kind of leakage in the brain area that gives the same symptoms as PPPD but it is hard to detect and the last resort to fixing it is an operation on your noggin. Has to be detected with a dye, I believe put in as a spinal tap, and an MRI carefully watched for signs of leak.

may diff, causes for that and one is long term use of opioids. I have used them since 1995. At first for constant pain as a result of an operation. Then later found that they caused slight constipation which is helpful to me as I only have about 8 inches of colon left. Don't abuse them - can't as they have to many side effects that add to the discomfort suffered thru PPPD. One thing I don't need is more health problems. And, that may be the cause of dizziness as I have a lot of problems that I take meds for and all of them say that extreme dizziness is a side effect.

Damned if you do and damned if you don't!

Hope is only thing that keeps you going to the next day when it may go away as strangely as it came or a break thru in medicine will offer relief if not cure.

Good luck, and hope you beat this. Jim

Thanks for the reply Jim, sounds like you’ve been through the Wars with this.

You state further up the thread that you have a few existing medical conditions plus the fact you had a ‘slight stroke’. That sounds quite intense and maybe a bit more serious that my situation. Maybe I’m barking up the wrong tree with my symptoms but I could relate to this thread easier than others.

Since my healthy diet/fitness regime

I do feel more sharper and energetic. The only thing is, I feel tired a lot more than not. I get a very slight pressure In my forehead, a slight ‘daze’ and my eyes go a bit red but I put that down to feeling tired. I feel as though we can all become hyper sensitive to every little feeling when we suspect something isn’t right. I keep trying to remember what I felt before all this when I was tired, i guess it was similar. 

I went to the doctors again anyway, he reckoned the flu jab possibly triggered it, whether it be my immune system over reacting or a even just a minor reaction that I blew out of proportion by worrying about it. Who knows.

A FBC (full blood count) that i’d had before is apparently not accurate enough to highlight any issues with certain levels in the body. He’s sent off for proper in depth immune system checks, celiac, vit d deficiency and ferritin problems to rule out anything.

Other than that he said if the results come back fine, to carry on as I am with the diet (with the added task of cutting out grains) and that the body will flush out any toxins that cause inflammation but it could take months potentially.

So yeah, I’ll see how It goes. As for the floaters in my left eye; they appeared the day after I had no sleep the night before. This could be caused by pressure behind the eyes from fatigue. So I’ll also see how that plans out.

Hope all is well anyway mate,  

Oh yeah PPPD is almost unheard of in the U.K. (where I am). The US seems to be more cluesd up with these kinda things.

After 5 going on 6 years of this I am finally following the  recommendation that was given to me by the Dr. at John Hopkins.

He suggested depression meds and I tried them, many different brands of them, and having found one that doesn't make me dopey and sleepy I have settled on Fluoxetine. They do wonders for this PPPD if you stay with the meds long enough for them to finally take affect.

That means anywhere from a week to maybe 4 or 5 weeks. BUT, they will start to work and you will wonder why it took you so long to get around to these if you are dizzy and feel like you are walking in a fog.

Especially at the times you are up on your feet. Not so much, if at all, when you are sitting or laying.

If you want to retrain your body and mind to keep your balance, like you were before this hit you, you might want to do Tai Chi at least once a day. If you don't know the moves you can get a DVD and follow what is done on it.

Remember, if you had this a long time especially, it took awhile for it to get a good hold on you and it's going to take a long time to shake it. So, you have to give the meds a try.

If your doctor suggest, for example, 40mg ask for it to  be given to you in a supply of 20mg so that you have the option to take the 40 all at once, if it agrees with you, or if it doesn't, you have the option to take it a two different time in the form of 2 20's.

It may take a long time for it to go away completely, if it is going to do that, or you may always have a little touch of it but you will find that if it does it is not going to be so intense as to ruin your life by being so bad all the time that you can not function.

I just discovered the curing power of these and so I can not tell you that it is going to take it away completely until I have been taking it long enough to say whether it is going to be a little bit there or gone completely.

I take it early in the morning and either go back to bed for awhile or get ready for the day and go sit down in a chair and let it get a hold of my brain, maybe 15 minutes to a half hour should be enough.

So, give it a try. You have nothing to lose, if your doctor says that you can safely take it, and you just may get your life back.

Good luck, Jim

Agreed, I’m in UK too.  However PPPD is a type of Functional Dizziness and there’s quite alot on the net about that. A Matthew G Whalley wrote a paper with a Debbie Caine that’s very enlightening and a neurologist from Scotland called Jon Stone writes it up.

Think it pays to research and try to understand any of the less common conditions yourself if you are afflicted with one. A good first step.

Hello gcut, How are you now? your symptoms sound similar to mine. Any advice? I have had this for 6 months.