Losing hope, don't know what to do anymore. Need advice on symptoms. (Long post)

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Hi all, I am 20 years old and struggling. This may be quite a long post full of symptoms, so apologies in advance but please stick with it because I'm desperate for help sad

Basically this all started just over 4 months ago. I had been going through a really stressful time in my life and since then it seems to have been one thing after another. I'll note I've always been an anxious person (shy, a worrier, catastrophiser, negative etc). However, i've never actually suffered from distinct anxiety, as in it never affected my day to day life. I had loads of friends, a boyfriend, did well at school and was doing really well at Uni. Part of all the stress was moving away to uni in a different country, living on my own and trying (and failing) to make a long distance relationship work with my bf. This was really taking a toll on me and had been going on for about 6 months before everything i'm about to get into began.

I smoked weed for the first time, and it really affected me badly (panicked, dry mouth, switching between uncontrollably crying with laughter to crying with sadness, paranoia/fear and feeling really 'heavy'wink. I think it must have been strong and I had way too much, since it was my first time trying it and I didn't know how much to take etc. This lasted a few hours then passed and I felt really spaced out the next day, but this also passed.

I had a 5 day headache after this that I couldnt get rid of with painkillers.

Then the next weekend, I was sitting doing nothing in particular when suddenly my right arm and right side of my face went numb/tingly, my vision blurred and I felt faint and lightheaded. This lasted a minute or so and then happened a few more times within the next while. It really freaked me out so I went to the ER thinking I was having a stroke. 

While i waited in the ER I was sweating, feeling like I was going to pass out, felt so sick, had blurry vision and was smelling burning (!!).

They did basic neurological tests, told me it was likely a migraine and sent me on my way.

This happened a few more times thorughout the week, i was given Sumatriptan for migraines but aside from getting rid of a headache i had at the time, it really didn't do anything.

The week after that I felt mostly okay aside from the odd dizzy/feeling sick and faint spell, as well as just generally feeling anxious because I didn't know what had happened to me and felt 'off' as in not myself. I was very on edge.

About a week later I suddenly started feeling dizzy and tried pacing around my house, but it just got worse and I started feeling like I was either going to vomit or pass out. I lay on the sofa for an hour unable to move or turn my head, then went to bed. When I woke up I still felt slightly dizzy and spaced out. 

(The spaced out/depersonalisation has stayed with me to this day - constantly 24/7 feel disconnected, like I'm in a dream. It's the worst symptom BY FAR)

I was getting bad headaches and stabbing head pains that i never had before as well as a full sensation in my head. I also felt very fatigued and was always napping.

THEN i started having a fullness in my ear, it 'echoed' my voice when I spoke and I was unable to pop it properly, and I had spells of a different kind of dizziness, more like I was on a moving boat/swaying. The fullness lasted for about a month maybe more, and this new dizzy/swaying/rocking feeling began to persist and now it is also constant 24/7. I always feel like i'm on a moving boat or as if the ground is moving below me. It worsens when I close my eyes e.g. in the shower washing my hair.

My ear still doesn't feel 100%, it almost feels as if there is fluid or something in it. It sometimes feels clogged and full and sometimes a tiny bit sore.

I also began having bad ringing tinnitus which, yet again, has persisted. I get pulsatile tinnitus in one ear too (i can hear my heartbeat, it gets worse when i hold my neck at a certain angle or just after excercising).

I had constant aching back pain for no reason for 2 weeks which neither a physio nor painkillers could alleviate. It was worse when I woke up in the morning and would be there constantly throughout the day. It seemed to just go away by itself. The only weird thing was that the physio cracked my back and a few hours later my thighs literally went numb. The muscles felt as though I'd done a SUPER intense workout (which I hadn't) which then progressed to literally feeling numb. They were sore for days!

I've had random episodes of shortness of breath which started in maybe month 2 or 3. As in they literally happen for no reason, I'll just be sitting watching TV and suddenly I feel like I can't get a full breath no matter how hard I try. This can last for like an hour and breathing exercises don't help, I just have to wait for it to pass (whilst panicking about it!!!)

I get random muscle twitching which doesn't really bother me, except that when i hold my neck at a certain angle my neck/head twitches almost like a tic. It isn't noticeable to look at but I can feel it and it's really uncomfortable and freaks me out.

Around month 3 I started having tingling on the tip of my tongue/a metallicy taste which comes and goes throughout the day every day. Also have visual issues such as floaters, flashes/sparkles & visual snow which I never had previously.

I never feel like I get a good nights sleep. I'm aware of myself waking up throughout the night a lot. And I wake up really early with my stomach feeling nervous and my heart pounding. I'm tired every day - not in a debilitating way, I can still function and do excercise etc, I just always feel like I could easily take a nap when i'm sitting around.

Sooooooo yeah. A LOT of different things. The symptoms I've mentioned that are constant are just that; CONSTANT. I get no break from them any day. It is miserable and has resulted in me dropping out of uni and returning back home.

I have been seen by a lot of different GPs. Had basic neurological tests, bloodwork done. All normal (except slightly high total cholestroal & slightly high iron - which surprised me). I saw an ENT and had a hearing test. He couldn't find anything in particular but tried a few meds (prochlorperazine, betahistine) which didn't do anything. Also saw a neurologist and had an MRI which came back clear.

My initial fears were things like stroke/TIA, brain tumours, MS, anaemia, b12 deficiency, thyroid, inner ear problems. All of these have been ruled out by the various tests I've had. 

I've been given diazepam (which helps reduce the anxiety but doesn't actually alleviate any symptoms). I tried citalopram (had a horrible reaction) and sertraline (made me more spaced out). Doctors seem at a loss on what to do or suggest at this point. 

I still get scared that it's something physical underlying it all. Just because my symptoms are CONSTANT. They don't worsen when I'm stressed or lessen when I'm relaxed. The 24/7 ones don't wax or wane. They don't really go away when i'm distracted. It is consuming my bloody life and i am miserable.

My newest fear that I've latched on to is Lyme Disease. I live in the UK so I know if i suggest this to my doctor I won't be taken seriously as it's not as prevalent here as other countries. The idea of it being that actually scares me cos it seems quite hard to definitively diagnose/treat, from what I've read a negative blood test isn't conclusive. But IDK.

Does anyone have any suggestions? Help? Advice? I'm so, so unhappy. Even if it turns out it is stress and anxiety thats caused it all, the symptoms themselves have given me anxiety as well. I get racing intrusive thoughts, feel constantly nervous and on edge, depressed. I felt suicidal at one point and drove myself to the ER - that's how bad its gotten. None of which I ever had before the past few months.

I see a psychiatrist and I have CBT therapy. My brother is a doctor so I can ask him about various fears I have. I don't know what else I can do at this point. I'm only 20, this should be the best time of my life yet I struggle to get through each day and welcome bed time and sleep with open arms as it's the only break i get from it all. I'm exhausted from fighting this every day.

So sorry for the ridiculous length of this.

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4 Replies

  • Posted

    All I can say is never touch weed again, and ask for therapy. CBT isnt therapy and is given first usually because it's cheap. That's all really, keep telling your psychiatrist and gp how things are

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  • Posted

    I have exoerienced so many that you have wow. I think its all stress related. Thats doesnt help you much. I do get b12 injections. Take a b complex vitamin daily too.  And drink lots of water. Everyday drink lots of water. Dehydration cause many issues as well.The b12 must be  400 or above or weird symptoms do occur. The uk accepts 200 thats an issue. They do sell sub lingual (under the tongue melts) if b12 id say buy them and use them daily. They pee out excess anyway.the only way to absorb b12 is under the tongue or by injectiin or a perscribed b12 nasal spray. I was b12 deficient. Many of your symptoms match up with a b12 deficency and it is very common today.  The weed didnt go well for you. There are so many similiar stories out there that issues started with a bad trip from weed. You are not the first.  I would ask you brither for a b12 injection. See if he will do this for you. Once a week for one month. You will undoubtably notice a difference if this is the core cause. I was initally given b12 injection having no clue why really accept my levels were low. I knew nothing about it then. All of a sudden i started to feel better and better. I used to feel like my head was in a fog a bit it cleared it all up so nicely. So it turned out to be helpful. Since you have access why not ask. For the rest of it the tinnitus and such hopefully the cbt and therapy will help calm you down.
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  • Posted

    Oh my goodness. You totally got yourself phyched out from the weed, and it brought on ALL these symptoms, and Yes, every thing you mention is anxiety, and panic. I can almost bet that you had issues before the weed. Some people get paranoid when they smoke, and alot of people smoke to calm down.  Go figure. I have had every symptom you have mentioned and then some. At least you can sleep. I couldn't even do that. I also have been on antipressant meds for years. Thank god for them. Because you are so freaked out, you are scared to take anything. I know this. I am telling you to get to your family doc immediately,and get on a antipressant. You have a chemical imbalance in your brain. Like I said,it's not the smoke that cause this,but you freaked yourself out, which brought your anxiety on. You are me,been there done that. I will be on them for the rest of my life, and I'm good with that, because I feel good. PS. You can talk all day to someone and you will still be anxious. I know this.

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  • Posted

    Wow...I could have written this my self! This is almost EXACTLY How it started for me. I was about 19. Always anxious and slightly neurotic type (like you say: "shy, a worrier, catastrophiser, negative etc"wink. But never had acute anxiety as such either. Then, one failed long distance relationship of 4 years. A few weeks prior to crash smoked weed for the first time, likely the joint was a little too big as I was very cocky and sure it is all in the mind and there is no way I would get high smile. Well i did get "high" I thought i was dying. Had a terrible trip. Took about two days to recover. Then started getting tense a few weeks later. Among many symptoms there wer also twitches as I would relax to go to sleep. Then sudden awakenings with pounding heart. An episode of sleep paralysis that was abbsolutely terrifying. An episode of blinding headache followed by 6 months of migraines. Then...panic attacks and general anxiety without triggers. Poor sleep. All tests came back clear including MRI, thyroid, vitamins, trace minerals, countless FBCs, Iron screens, heart tests, chest x-ray and hormone work-up. Then it became a daily struggle with the symptoms - all that you mention even including the smell of burning but for me also smell of rotting flesh! I remeber saying to a nurse that some organ of mine must be dead and rotting away as I can smell it. She just gave me valium and 30 minutes later i chilled out. Horrible feelings. Countless trips to ER. Some relief with benzodiazepines given to me there and then finally some minor relief with start of psychiatric therapy, but never a fiull remission until 4 years later when my symptoms worsened during pregnancy and reached point of psychosis following the birth of my first child. And this is where our stories part smile I met a psychiatrist then by chance (was seeing a psychotherapist who went on holiday and left this guy behind as a back-up contact). He immediately reinstated medication and shot up to double dose as he explained the prior dose (what i was taking before pregnancy) had been inadequate which is why i never really felt good on it. I was reinstated therefore on venlafaxine (effexor xr) and treated at last at 150mg. For the first two months of this new treatment plan i was placed on xanax, 3 times per day up to 3 mg per day and then slowly weaned off. My firstborn was 8 months the first morning i woke up and truly enjoyed her. I looked in the mirror and felt at home in my skin that morning. I never felt so relieved in my life. Still afraid that i will fail and regress again. Every day i got a tiny bit better. It took 2 years for most symptoms to ease up. And following two years i had slowly regained control of my life and symptoms entirely withdrew. I was unable to have a panic attack. I slept normal. I ate normal. I was ok. I spent two more years in maintenance therapy on same dosage and finally started tapering off after that - withdrawal took another two years. I got pregnant towards the final patch so we sped it up a little at the end to reach minimum dose, discontinuing entirely in the 7th month of pregnancy. No issues. Had a c-section. Did not have a relapse. Totally functional. Some notable life upheavals - no issues except fleeting increase in tension - normal responses! Now drug and symptom free for the last 3 and a half years. Recently reinstated Effexor at half dose as preventive 6 month treatment due to some major upheaval in family and though i was coping ok I did suffer some situationally acceptable burn-out so my doctor was not keen to test drive just yet. I have learned over the last 11 years to trust him smile Completing that in about 2 months. Not a trace of uncertainty. It does get better. I have no advice to offer, except that once you get the right medicine at right dosage you can calm your brain down enough to regain control. So keep trying and looking for the right medication. It feels so odd to hear from someone whose journey into anxiety started so similarly. Sending much much love.

    PS I live in the mediterranean and work with rescue dogs. I had my share of ticks attached to me. Not only do I not have lyme disease I did not even get any of the other tick-borne diseases I could get with carrier dogs, like ehrlichia for example. smile Why do you even think you may have Lyme?

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