Unusual Chronic Migraines?

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I've been having some really unusual symptoms for about the last year, and, even after seeing numerous doctors (primary care doctor, ENT, neurologist, neurootologist, etc.) and having multiple tests done (blood testing, VNG, MRI, neuropsychological testing, etc.), I don't know if I know what's causing them. I also haven't had any success in noticeably alleviating them so far. I'm now starting to suspect my symptoms may actually be due to a very unusual form of chronic migraines (because it's the only thing I've found that seems to potentially explain all my symptoms, even the weird ones). Therefore, I wanted to get input from people who have experienced migraines themselves and know more about them. 

First off, I posted a discussion in the Vertigo and Dizziness board about the same symptoms a few weeks ago with a lot of detail, so I'm going to post a link and give a shorter version rather than repeating it all in detail. That discussion is here:

http://patient.info/forums/discuss/mysterious-dizziness-and-other-symptoms-567591?page=0#2602650

Anyway, my most persistent symptoms are a constant dizziness or lightheadedness (with mild, but noticeable, balance issues) that fluctuates but never goes away. I don't feel like anything is spinning or I'm going to throw up, but I do feel faint sometimes, so at least part of it is probably presyncope. My other symptoms come and go from day to day and moment to moment. The most disruptive of these are things like difficulty concentrating, "zoning out" a lot, lack of energy, and feeling weak (but not in pain), especially around my joints. 

However, I do also get headaches, although they are often barely noticeable, and, even when they are worse than usual, they are highly uncomfortable, but not really painful. It does definitely feel like a pulsating or throbbing even it's not severe, though. I have a hard time identifying the location of these headaches on my head, but the pulsating does seem to be asymmetrical and at least sometimes occurs around my left temple just past my hair line (I don't think that's the only location, but it's the easiest to identify). 

Then, finally, there are the weird symptoms that mostly seem to be brought on by even relatively mild physical activities I used to have no problems with (going up and down stairs with laundry, picking up dog poop in back yard, etc.). The most noteworthy thing is feeling "winded" way too easily as though I just ran laps around the block. My heart rate goes up and I find myself having to stop and catch my breath just from doing things I had been doing without problems right up until my symptoms started. Sometimes I also get mild tremors in my hands, excessive sweating, or a burning feeling in my throat (probably dryness/hoarseness). That's not an exhaustive list of symptoms I've experienced, but it's most of them.

As an explanation, chronic migraine-associated vertigo or just chronic migraines in general seems to fit my symptoms very well at the very least. Although I am a man and migraines are more common in women, I have a family history of them with both my mom and sister experiencing them (without the headache in my mom's case). I also have a low-frequency hearing loss in my right ear only that has remained about the same for around two decades. I read that this is associated with migraine-associated vertigo, whereas progressive hearing loss is associated with Meniere's Disease. As for the nature of my symptoms, it would make sense that they all fluctuate or come and go if migraines are coming and going, too. Migraines also do tend to worsen with the types of activities I described (i.e. stairs). In addition, I noticed early on that my symptoms sometimes seemed to worsen on days when the weather changed a good deal from the previous day, although it wasn't a sure thing and I kept wondering if I was just imagining the pattern. Chronic migraines are also the only explanation I've found that could potentially explain every single symptom I've been experiencing. Even symptoms I had noticed but hadn't paid much attention to, such as yawning a lot or body parts seeming to "fall asleep" more easily than before, turn out to be migraine symptoms. I find it highly unlikely that the pieces would fit together as well as they do by coincidence.

The problem is that, although migraine explains my symptoms very well, I don't fit the typical description of the diagnosis anywhere near as well. For one, my headaches range from barely noticeable to very uncomfortable but not painful. That might be similar to my mom not having headaches with her migraines, but it's not what's expected for migraines. The bigger problem is that I have very little sound sensitivity and even less light sensitivity. It's so mild that I still am unsure if I have any light sensitivity at all or if I was just imagining things. Considering these are some of the first symptoms associated with migraines, this may make it very hard to convince a doctor that it's really migraines. Finally, migraines are supposed to occur in distinct phases, usually with the person having some sort of indicator when a migraine is coming. However, I notice fluctuations, but I can't even tell whether I'm in prodrome, attack, or postdrome at any given moment, much less when an attack is coming. 

Those details could make it very difficult to get diagnosed with migraines because they're just so different from the typical profile of a migraine sufferer. I meet with the neurologist on the 20th to try to "argue my case" on this, but I still have no diagnosis for these symptoms. Without a diagnosis, there's only so much I can do on my own, so I hope that I'm somehow able to persuade my neurologist about migraines as an explanation.

So what do the rest of you think? Do my symptoms sound like they could be an unusual form of chronic migraines to you? If so, do you have any advice for convincing the neurologist? If not, do they sound more like some other condition?

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  • Posted

    This sounds awful.  I'm not a dr. and highly suggest you continue to work with your drs to rule out any disorders.  I will share an abbreviated story as i have posted a few times over the past 6+ months of my experience.  i did a copy/paste of my lenghtly and ridulous sitation - I say ridulous as I had two misdiganosis and really questioned my neurologist and he missed some tell-tale signs.

    ...Over ths summer, I was diagnoised with with a Sproradic HM 2 months ago.  Since the incident, I am still recovering.  I'll make this short with specific things I've learned and am putting into practice.  My situation was brought on by a new bed that was too soft and initially caused neck and shoulder pain/impingement, followed by that day shopping in a very cold A/C store with the start of headache and then stepping outside to the sunny, very warm outdoors. Bam, it happened within an hour of these events coming together.

    What I learned; After 5 weeks I was still not right, experiencing dizziness, fatique, chronic neck and back of head pain (not in the normal headache zone), brain fog, unable to concentrate, a flight of steps required me to rest). I suggested to my new neurologist, I need to go to Physical Therapy.  I am working with a PT who specializes in migraines, vertigo, concussions.  He found I had atlas subluxation, and my head and eye mechanics were off for two reasons.  1) for the fall that occurred, 2) that my neck muscles were so tight and not functioning as they were protecting my head/injury, and as a result I continued to with regular migraines (from neck tension) for the 5-6 weeks after.  I am in PT for 10 weeks to stretch and strengthen my neck, chest, back and stomach muscles, regain my eye coordination by doing the PT's specific puzzles - like number searches on a checkerboard.  PT IS CRITICAL for the RECOVERY - just like for a stroke patient.  I'm learning how to reduce and override the migraine symptoms through meditation, not going to bed when I get dizzy, but focus on stationary object and 'RETRAIN" the brain and override the symptoms if I can.  I always listen to my body if this is not working, but if I head to bed, I do deep breathing which reduces the tension up the neck and into the head. This is working for me - not the first or second time, but after numerous tries as I am overriding the 'migraine brain'  from taking over. 

    ...it has been 5 months since I posted that and I am still in PT - doing great.  My symptoms continue to subside every day.  I had atlas subluxation and c1-c4 neck vertrebae issues.  My neurlogist and primary care did not realize my migraines were neck related and  upper trapezoids/back.  They thought only of the neurlogical issues and not the musclelar skeletal issues.  You may want to look up atlas subluxation, and c1-c5 veterbrea issues.  Again, you situation sounds complicated, but many drs miss the  musclelar skeletal  part and only think migraine are neurlogical (brain, hormones, food).  Best wishes and I hope this may help a little

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    • Posted

      Atlas subluxation, huh? I guess I'll have to look up some info on that. At this point, I may as well consider all of the possibilities, and I actually was aware of neck-related issues existing that can cause similar symptoms to mine. I guess part of why I never looked into it all that closely is because I really haven't noticed any neck pain. I guess, now that you mention it, I have noticed some pulsating/throbbing in the back of my head when the headaches are worse than usual, though. Considering the brainstem is the brain's balance center and is right in that region of the head, it makes sense. Also, I don't know if I mentioned, but moving my head and neck around is one of the most sure-fire ways to make my symptoms worse, at least for a few moments. Showering often makes my symptoms flare up somewhat between the heat and all of the tilting my head back and side to side when washing my hair.

      Apart from the neck pain and eye tracking issues (neither of which I have), your description of your symptoms actually sounds fairly similar to mine. How is it that you got diagnosed with migraines when your symptoms seem to differ from the usual "headaches and bright lights" manifestation of migraines? I don't know how things will go trying to convince my neurologist next week, but it seems like it would be hard to get a doctor to commit to the diagnosis when symptoms are so different from the norm for migraines.

      Anyway, I've heard a lot of emphasis on physical therapy, so I get how important it seems to be for most forms of dizziness or imbalance, but I had an unsuccessful experience with it a while back, and it's been hard to motivate myself to get back into it since then. I tried doing vestibular rehab exercises with a physical therapist for a bit over a month and had my balance tested in this "voting booth" looking machine with a tilting floor and walls three times during the process. That balance testing is the only test I've had so far that hasn't come back normal, but, even after doing the balance exercises pretty consistently for over a month, the balance testing results didn't show any kind of clinically significant improvement, nor did I feel that it had helped at all. My physical therapist seemed as confused as I was about what was going on with my symptoms and why there was no apparent improvement (she had told me I should start to see at least some slight improvement after a month or so if the exercises are working), so I stopped seeing her and eventually got out of the habit of doing the exercises. Honestly, it was always hard to force myself to do the exercises because they were tedious, frustrating, and left me feeling cruddy and drenched in sweat afterwards almost without fail. I generally did them at least once a day, but I was lucky if I could get myself to do them twice in a day. Then, at one point after that (before I started seriously suspecting migraines as an explanation), the neurologist gave me a printout suggesting balance exercises that were like what I had been doing but more of them and more difficult ones and said to do them three times a day! So now I'm supposed to do those miserable exercises that didn't seem to work the first time, except even worse? Given how hard it was to stick with them the first time and the fact that I've lost faith in their ability to help me, I'm not exactly on board with the idea. I'm just not that much of a masochist. How do I even know what physical therapy exercises are appropriate without being sure about the root cause? My balance testing results seemed to be all over the place.

      Sorry I ended up venting a bit too much in that last part, but I guess if I'm going to get back into doing the physical therapy I'm going to want a new physical therapist who I can be confident in. If I'm going to put myself through that, I need some reason to believe that it is actually going to pay off. Plus I never did get my neck looked at since this all began (due to noticing no pain or stiffness), so perhaps that may be worth doing. The question is what kind of professional even does stuff like that?

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    • Posted

      You have put a lot of information out there so I'm not exactly sure where to start. What I did pick up is for me to washing my hair and tilting my head back was so traumatic for me. I did have a lot of pain at the base of my skull. Because my neurologist was not aboard initially I went to an Urgent Care over weekend because I was in such chronic pain and they took an x-ray of the back of my neck. The results showed Atlas subluxation and fortunately I had a PT who specialized in migraines concussions and strokes. I also saw a neck and spine doctor who can physically put their hands on your neck and feel the vertebrate to see if they are misaligned. I strongly do not recommend going to a chiropractor. Both my PT and my neck and spine doctor have warned me never to go to a chiropractor which I have never been to and do not plan to go to. I was at my wit's end before going to the Urgent Care and actually sought out and Eastern medicine doctor who visually saw that my head was tilted and that was a big indicator is he said something is wrong with your neck and head. Thus I went on to the Urgent Care got an x-ray to confirm it and switch from my neurologist to a neck and spine doctor. My neck and spine doctor coordinated and told my neurologist essentially for two months this woman has been dealing with all these symptoms and issues and it was not a neurological or brain type of migraine but a muscular skeletal issue. My PT initially loaded me up with lots of exercises and I try to do them and sometimes the symptoms would be worse I just had a talk with him and Toto we need to take this slower and now we're in a very good schedule of just adding on a new exercise or two with each of my visits. One thing he did tell me is do not do all your PT at one time try the neck stretches and then some of the back strengthening. Then if you can later in the day or the next day do the remaining two other exercises. Now months later I'm able to get through its 5 exercises and a half hour and it turns out to be a little bit more like a workout, as I'm regaining strength. Continue to meet with your neurologist and maybe suggest like I had to my neurologist that PT was my Avenue for healing and he now sees that is the case. Again I'm not a doctor and you do have quite a bit of symptoms and I just wish you the best

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    • Posted

      I don't expect you to know everything or have all the answers, so hopefully I didn't make it sound like I did. Anyway, that's good information to have. Any clue what a neck and spine doctor is called? If not, I can probably just google it along with atlas subluxation tomorrow (since I should go to bed soon).

      I'm actually a bit interested and curious about the stuff about never seeing a chiropractor, though. Maybe they were worried that chiropractors might make things worse by carelessly messing around with such a sensitive area of the skeleton. This is good to know because my parents and sister have a chiropractor they all like that they've been seeing for years. Without being able to figure out my symptoms, we were considering making me an appointment with him to at least ask if he thought it was something he could help with (though we never did actually schedule one). I guess it may be better if I put that idea aside, at least for now, if doctors are specifically warning you not to see a chiropractor.

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      Well, I looked up a lot of information on atlas subluxation, and, apart from the lack of noticeable neck pain or stiffness and the fact that I can't think of any neck injuries I've had (although my posture does basically suck), it actually fits my symptoms very well. Who knew so many important nerves and blood vessels passed through or next to the atlas? I was especially surprised to read that apparently about 80% of the body's proprioceptors pass through there. That seemed significant since my neurologist told me last time I saw him that he suspects my balance issues are a proprioception problem. Actually, I looked closely at myself in the mirror after reading all of this, and I did notice a slight tilt in my shoulders. I was able to straighten out my shoulders and head, but it felt awkward and uncomfortable when I did.

      What all of this means is that atlas subluxation seems very worth looking into as a potential cause of migraines and/or my symptoms themselves. At this point, if my atlas is the culprit, I have to wonder how long it's been like that, actually. It might have been messed up for longer than I expect.

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    • Posted

      I too had really poor pasture and the breaking point for me it was sleeping on a really saggy bed at a family member house I had never slept on. my neck and spine Dr keeps telling me he cannot believe it happened this way, but my husband and I can only point to this because we both woke up with some chronic neck and shoulder pain that day. Since he works out regularly and has good posture, we figured he was not in such comprised situation. On another note with regarding me saying I'm not a dr was just because I've gotten so educated on all this I hope it helps but a qualified medical person can help more. I helped another person and some of my jargon was getting really really technical, and I just put that caveat in there as I wanted to make sure she sought the proper help and wasn't just taking it for me. Good luck!

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  • Posted

    Hi Sl,

    I experience some of your symptoms.  All I can say is be persistent!. I was airlifted to a major hospital with a suspected stroke the  neurologist said I had a migraine!  I saw another neurologist and my heart specialist they finally worked it I had a stroke and a hemiplegic migraine at the same time.  So much for the earlier diagnosis.  

    It it is no point arguing your case you need to find a neurologist that specialises in migraines.  I was lucky my GP knew such a specialist and my GP had a patient once who had hemiplegic migraine.  One more point - my second specialist acquired the same images and viewed what the reports were based on and discovered areas they missed reporting on that were important towards a diagnosis.

    I hope this helps

    Tenter22

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    • Posted

      Well, it actually was only within the last week or two that I connected the dots with my symptoms after reading more about migraine-associated vertigo and migraines in general, so, in all fairness to my neurologist, migraines didn't strike me as that likely previously, either. I was caught up on the "typical" type of migraines and the fact that I didn't seem to fit the description of the diagnosis.

      Even if the result isn't what I expect, this seems like a major breakthrough in my thought process, so I should tell my neurologist anyway. If it leads to a referral to a more specialized neurologist, more tests, or something of that nature rather than a diagnosis right then and there, then at least I'm actually making progress toward figuring this all out again. Just so long as it's not like my last neurologist appointment when I got something like, "Here are some balance exercises you could try. That's all I've got for you."

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    • Posted

      Hi SLJoosteen

      with that wonderful advice I can see how would feel like making your case withe the next specialist.  I had that experience.

      When you find the right one keep up the dialogue because as I am discovering they are learning and refining their research understanding about this field.  My neurologist has asked me to make a diary of my days.  Refer to the migrainetrust.org it has a pro for a diary it might help you

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    • Posted

      Well, I'll still look at your link, but honestly, apart from being unusual for migraines, the mild nature of my headaches and lack of a noticeable indicator that an episode is coming present some problems for understanding what triggers my episodes or preparing for them. Specifically, I notice that they fluctuate, but I really can't identify when an episode begins and ends or even tell when I'm in prodrome, attack, or postdrome. For instance, my symptoms seem worse than usual today and yesterday, and I think it's related to the weather, but I still barely notice a headache in this case. I also don't recall anything two days ago that would've indicated my symptoms were about to get worse the following day. That's part of why I didn't think migraines sounded likely for quite some time.

      In any case, it's difficult to keep a diary of attacks when you can't make that distinction. It would also make it equally difficult to use the short-term medications that you take immediately before or during a migraine to prevent or stop it (although it's a moot point since I haven't been prescribed any). Therefore, if I were to be prescribed medication for it, it would probably have to be something I take daily to hopefully reduce the frequency or severity of attacks.

      And then, elsewhere in this discussion, atlas subluxation was brought up, and it seems to also fit my symptoms quite well, as it can cause migraines and some of my symptoms themselves. Now that I've read about that, it seems it's possible that I may be having migraines resulting from that (which may explain their unusual nature). Anyway, if the migraines are caused by that, then I'll probably end up having to see a different specialty of doctor altogether. The bright side is that atlas subluxation is fully curable, unlike migraines. In fact, I read that some people with migraines due to atlas subluxation stop having migraines in time after their atlas is fixed, so it may actually be more promising if that's the root cause.

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  • Posted

    Okay, I just met with the neurologist a few hours ago, and I'll warn you that this message is going to have some "venting" in it, because it did not go well.

    I had gotten the impression last time I met with him that the neurologist I've been seeing has no sense of urgency in spite of the fact that figuring out and addressing my symptoms are a huge priority and very urgent to me, but my mom (who is a psychiatric nurse with a counseling degree on top of her RN) helped me realize after going to my appointment with me that, in addition to his lack of urgency, he hasn't really even been listening to me and isn't interested in helping me figure my symptoms out because his mind seems to already be made up. He most likely took one look at the normal results of the MRI they did of my head several months ago and decided to chalk up my symptoms to mental illness in their entirety (assume they're psychogenic, in other words). I may as well have been scheduling appointments to talk to a brick wall. I am not happy about this.

    In the interest of full disclosure, it is true that I have had ongoing mental health issues since childhood. The most notable of these is generalized anxiety disorder, which I was diagnosed with around 4th grade. I was also diagnosed with ADHD even younger than that, although, when tested later, I fell just short of diagnostic criteria, so it's less clear to what degree I'm affected by that. It's also true that I went through a tough period of my life a couple years ago which probably would've qualified as an isolated episode of clinical depression. However, the former two have been ongoing issues for around two decades before my symptoms started, and the difficult period years ago seems to have mostly run its course. In fact, I would say that my anxiety and mood were better controlled when my symptoms began than they had been at quite a few points in the past. As one would expect, though, my symptoms, their debilitating nature, and the inability to explain or treat them after over a year of appointments and tests with various doctors have placed considerable burden on my mental health. 

    Also, I've been on some form of antidepressants for most of my life, both before and after my symptoms, and my symptoms have seemed unchanged even after a few tweaks since they started. Despite this, the neurologist told me to just "wait on the Cymbalta" (which was prescribed by my psychiatrist about a month ago and was no thanks to him) while he offers me nothing else of use and ignores my talk of potential somatic causes such as migraine or atlas subluxation (again, because of the one MRI they never bothered to show me or take another look at). To add insult to injury, he then felt the need to tell me about serotonin, norepinephrine, and dopamine and talk about "something called depression," as he put it, after I had mentioned I had gone to college for psychology and taken anatomy, biopsychology, and psychopharmacology courses, among other things (even if I don't recall all of the specifics anymore without being reminded of them). The point is that I'm well aware of what serotonin, norepinephrine, and dopamine are, and I definitely know what depression is. I guess that would be a dead giveaway that he wasn't paying attention to what I was saying.

    Anyway, at the end of all this, the one useful thing I got out of the appointment was information about a good physical therapist not that far away that may be able to help me more than my previous attempt at vestibular rehab did. Even that was only because my mom asked him about whether it would be safe for me to see a chiropractor about it (to which he replied that I should request the "activation method" rather than manual manipulation of the neck) and then asked him for specifics after he said that the relevant mainstream medical practitioner for my spine would be a physical therapist. Suffice it to say that, if I need to continue seeing a neurologist rather than just a physical therapist and/or chiropractor, I'll be wanting to find a different one who actually takes me seriously and respects my need for tangible progress sooner rather than later.

    On a different note, I looked up what the functions of the brainstem are other than balance before my appointment today, and the information I found seemed both enlightening and scarier than anticipated. As it happens, the brainstem regulates many things relevant to my symptoms other than just balance, including heart rate, breathing, sweating, temperature regulation, alertness, and consciousness (as in syncope or presyncope). Disturbances to it can also cause muscle weakness, which I occasionally have a bit of, and there do exist types of migraines affecting it (though they are uncommon). The scary part that I wasn't expecting was what can happen if something is really wrong with the brainstem. The brainstem controls such vital (and often involuntary) bodily functions that structural damage or stroke there can easily be fatal, and in some specific cases it can result in "Locked-in Syndrome," in which the person is fully conscious but completely paralyzed everywhere but their eyes. Frankly, if my mental illness were as out of control as the neurologist seems to think, I would have had an anxiety attack upon learning that. Instead, I decided not to get ahead of myself and that I had read up enough on the brainstem for the time being.

    Nonetheless, the take-home message was pretty clear. Brainstem problems can be very serious business. Considering so many of my symptoms are related to various functions of the brainstem and we still don't know what's causing them or whether it affects blood flow there (with blood flow being closely related to stroke), it baffles the mind that the neurologist found no urgency in the situation when I pointed that out. He said something about no lesions or structural damage to the brainstem showing up on the MRI, making him think that it was biochemical ("biochemical" was probably code for "psychogenic"wink and therefore less urgent. However, that seems like a moot point when I seriously question if I'd be stitting there alive and conscious with the ability to have a coherent conversation with him (speech is also regulated by the brainstem) if there were structural damage there. When it comes to the brainstem, I don't plan to wait until it gets structurally damaged.

    Anyway, I had to get that out, so thanks for putting up with me. The moral of the story is the neurologist was useless and offensive, the brainstem is serious business, that normal MRI still is hard to explain if nothing was overlooked, and the next person to see would be a good physical therapist, a better neurologist, my family's trusted chiropractor, or some combination of the three.

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    • Posted

      Im' sorry to hear the very unproductive, and what seems like a oppositional meeting.  First, the good thing is you have the support of you mother and her background -highly educated as a nurse, and certainly your mention of college education/courses give you a leg up on be informed.  Also, you know yourself, your body, what you are suppose to feel like.

      The upsetting thing is certainly not be heard, and 'really studied' for what you feel and 'think' could be a root cause of the issue causing the symptoms.  You mention of a history of depression, or boarderline ADHD is an clinical diagnosis given to millions of people (annual) or within a lifetime.  I had to go back to your original post about your symptoms: 'Anyway, my most persistent symptoms are a constant dizziness or lightheadedness (with mild, but noticeable, balance issues) that fluctuates but never goes away. I don't feel like anything is spinning or I'm going to throw up, but I do feel faint sometimes, so at least part of it is probably presyncope. My other symptoms come and go from day to day and moment to moment. The most disruptive of these are things like difficulty concentrating, "zoning out" a lot, lack of energy, and feeling weak (but not in pain), especially around my joints. '.  All of these symptoms are real, and if they are not related to medicines you are taking - or any potential alcohol or drug use - then you have options to seek out other/second opinions.  You may remember, I was at my wits end, along with suffering paralysis, word search/aphasia - my pain at the back of head was at a 10 (scale of 1-10) almost constaintly and my neuorlogist kept saying over a 8 week period - wow, this a particularly bad/long Hemiplegic Migraine (HM).  NO! it was Atlas Subluxation, that CAUSED my HM. I found the cause.  It was particularly upsetting that I felt I knew more - but I had faith that I new my body and how I had been before this whole ordeal started.  I will say, you have options - and that's a good thing.  One thing, as you pointed out - the dr mentioned a good physical therapist. Go to that therapist, document before you go for your evaluation, your core symptoms, when it started, etc.  My PT saw my condition when I walked in the door.  Not that your PT may be able to see that for you, but note they look at the muscle/skeletal, movement part of the human body, that so many drs get out of touch with are they are immersered in it like a PT.  Silly little note - I was runner for years, and had problems with the arch of my foot. A podiatrist made me shoe orthodics for years I wore that as they provide a bit of comfort.  When I moved, my podiatrist looked at my orthodics and said - yep those are good.  After a skiing injury, I was in PT to rehab a shoulder from a bad spill.  while my PT was rehapping my shoulder - I said - you know I have these goofy shoe orthodics - two drs have endorsed them - they don't feel all that great.  She looked at them - and said - WHAT!! you have the wrong type of orthodic - no wonder you have hip, joint, foot pain.  With a correct orthodic made by my PT clinic - I became a runner again!!  

      You have options - second opinion, a PT, and I dont' know your insurance or finanancial situation, but you could walk into a Urgent/Immediate Care for an x-ray of your neck...if you think that is a possiblity.  Mine was x-ray of neck confirmed my situation (at the urgent care - no neuroligist referral.  I just called ahead and was assured they had a radialogist at their site to read it), and then after getting over to my neck/spine dr., he/and I wanted an MRI of my neck to futher look at any soft tissue damage.  If I were you, I would make an appt with the PT for evaluation.  I went late one night, when I knew they were not busy and he spent a good amount of time with me.  I clearly voiced my symptoms and situation and in our next meeting, we together hatched a plan to get me on the road to recovery.  Get well!

       

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    • Posted

      Yeah, I know that I have plenty of other options without wasting my energy on a neurologist who delegitimizes my distress and blows off the insights I've gained through my own information gathering and the help of people on these forums (who have easily been more useful than he has in spite of having none of the expertise). Part of it was just me needing to let off some steam. I also know that I was very lucky to have my mom there with me. I probably wouldn't have realized how much I was being disrespected if she hadn't been there to connect the dots that I didn't, and I probably would've been very disheartened afterward instead of just p*ssed off at the neurologist. Actually, though, the appointment wasn't really confrontational because we didn't criticize the neurologist to his face; we discussed it amongst ourselves when neither he nor his nurse were in the room, as well as right after the appointment.

      As far as the mental illness and stress stuff, it won't do me any good to pretend it's not there, but for a doctor to blow me off, refuse to consider other possible causes, diagnoses, or treatments, and unfairly "pass the buck" to mental health providers instead of doing his job is just as unacceptable in neurology as it would be in any other area of medicine. The fact is that virtually every medical condition in existence can be adversely affected by stress, depression, or anxiety, but most doctors don't take that as an excuse to dismiss what their patients are saying and avoid doing their jobs (especially if there are possible red flags that remain unexplained and unresolved).

      Admittedly, there has already been a bit of an obstacle to finding the next professional to meet with. It turns out that the physical therapist that was mentioned to us is not covered by my insurance. There are other physical therapists in the area that would be covered, of course, but my issue is figuring out how to find one with the right expertise for me. Ideally, I'd want a well-educated physical therapist who specializes in the neck (I would say the brainstem, too, but, given it's the brain's balance center, that would be in any physical therapist's jurisdiction). What I don't want is to waste time and energy with a physical therapist who's as confused as I am about the cause and nature of my dizziness and imbalance like I did during my unsuccessful attempt at physical therapy months ago. Still, in any case, I'm not throwing in the towel that easily. I just need more information. Besides, there are always the options of a new neurologist and/or the family chiropractor, as well.

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    Okay, well I just started seeing the family's trusted chiropractor this past week, but, although it's too early to judge, it seems like adjustments have done little to nothing for my symptoms. They have loosened up my shoulders and upper back noticeably, though, making them feel more comfortable (although they seem to have stiffened up again within days). The more noteworthy thing, though, is that I had neck x-rays earlier today and looked at them with the chiropractor, but it looks like my atlas and axis are completely normal and the only visible abnormality was that my C3 and C4 vertebrae didn't have the proper curvature, so my neck was actually a little too straight. The strange thing, though, is that the symptoms that seem to be associated with the C3 and C4 vertebrae really don't seem to fit my symptoms especially well overall, so I'm not really sure how to take all this.

    Oddly enough, though, while gathering information online (initially about atlas subluxation), I stumbled upon the term vasovagal syncope. Knowing that at least part of my dizziness is probably presyncope (though I have never had actual fainting or syncope since I was very young) and that the vagus nerve both passes directly in front of the atlas and seemed to potentially have some relation to my symptoms, at least, I decided to look up the term. Apart from the lack of actual fainting, I was surprised to discover that the symptoms of vasovagal syncope (or perhaps some other form of syncope or the vasovagal response?) seemed to fit many of my most noticeable symptoms almost perfectly. Unlike migraines, I seem to have almost all of the common symptoms listed other than nausea and "tunnel vision." At this point, I'm not sure if I should see a cardiologist or not. On the one hand, my blood tests were normal, as were my blood pressure and pulse when taken numerous times at doctors' appointments, so there are no other indicators of some cardiovascular problem, but I haven't had any other cardiovascular tests done, either.

    The other thing that puzzles me is that, if my symptoms are indeed chronic vasovagal presyncope, what could be causing it all? Is there some particular reason it has never resulted in actual fainting or is it either luck or the fact that I've stopped and rested before it became that severe? There are a few possible contributors, such as dehydration, hot or stuffy environments, gastrointestinal issues, and so on, but I have a hard time believing that any of them can explain my having at least certain symptoms chronically for over a year.

    As much as entertaining the possibility that the neurologist's assumptions could've been correct leaves a bad taste in my mouth, I do at least have to consider that possibility, as well. It is true that the vasovagal response is highly sensitive to stress, anxiety, and emotions in general. It's also true that my symptoms were about as bad as they've ever been months ago when my "man cave" in the basement flooded with water three times in one week and I was extremely stressed out about that fact. It had actually flooded one or two times before that (though not in close succession), and the first time it did water dripped onto my laptop from the cieling and broke it. Anyway, after one of the three floods in this horrible week, I was trying to push the water toward the drain after I discovered the flooding (so there was physical exertion involved as well as stress), but I felt like I was getting really close to passing out, so I had to lie down in my bed for the rest of the evening and leave the flooding completely unresolved. Even then, stress was probably only part of the larger picture.

    With  exceptions, that week being one of them, I'm completely honest when I say that I really haven't felt especially stressed or anxious the majority of the time I've had these symptoms, though. Therefore, if it's stress or anxiety, it isn't conscious stress or anxiety most of the time. Frankly, even if subconscious stress or anxiety were a possibility, there's no good way to test what you can't consciously observe (which is part of the problem that experimental psychologists had with psychoanalysis many years ago). If I'm not consciously aware of it, I have no way of knowing whether it exists or not, right? Nobody else has direct access to my inner thoughts and emotions, after all.

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  • Posted

    Well, I have yet to be professionally diagnosed and treated (currently waiting on doctor appointments), but it looks like I finally figured out the cause of my symptoms for anyone wondering. After posting another discussion on the autonomic dysfunction board and doing more research, I did a self-test for something called postural orthostatic tachycardia syndrome(POTS) using my mom's pulse occimeter and met the diagnostic criteria for POTS in two ways. My heart rate isn't even the most noticeable symptom to me, yet it turned out that my heart rate went as high as 140 beats per minute simply from standing in place next to my bed for 10 minutes. Now I basically just have to find the right doctor to diagnose and treat me (and probably verify my results beforehand) and hope that symptoms start improving.

    On a different note, my atlas and axis looked totally normal on x-rays, so it's likely (but not certain) that I don't actually have atlas subluxation. As for migraines, I do still have the mild headaches from time to time, whether they're migraines or not, but that's consistent with POTS since it can cause headaches including migraines.

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