Is anyone suffering like me - SFN/vestibular migraine etc?

[JadeD]

Hi all

I’m in a really bad way and looking for some emotional support please.

I’ve had gradual onset ME since the age of 12 but only mild until aged 28 when I became severe. I improved a bit enough to do 12 hours work a week from home despite being mainly housebound/bedbound (after 1 year of being completely bedridden) struggling with intense body wide pain and PoTS on top of the ME. I had a bit of a quality of life and could still enjoy a few things.

However things took a turn for the worse and I think I got covid in December 2022 and it triggered vestibular neuritis and now daily vestibular migraines, a massive MCAS flare on top of my usual chronic migraine headaches. My idiopathic SFN burning pain has now spread to my chest, back of my nose which is so intense, my entire scalp and my large fibres are now being affected with constant tingling/buzzing in both legs up to my pelvis.

My anxiety is through the roof with daily panics and deep deep depression. I was emotionally quite intact before this recent decline but it’s sent me to a whole new level of suffering with the pain, inability to sleep and the daily vertigo and nausea I now have from the vestibular migraines. None of my ability to function has been left untouched. I know so many of you suffer like this. I’m 35 and have a husband and we dream of having a child but it feels like the odds are stacked against me.

Do any of you experience the symptoms I do? I 1000% have ME with severe PEM, cognitive dysfunction, flu like symptoms, inability to exert even a tiny bit standing etc but I’m unfortunate to also have SFN/FM/vestibular migraine etc. It’s the VM and crushing pain that I most struggle with and now my mental health.

I’m literally clock watching all day long as the symptoms are so intense and there’s not much I can do physically or mentally to pass the time. I have lost interest in everything as seeing other people live is so painful. My poor 71 year old mother travels to see me everyday and care for me and all I can do is talk to her about my symptoms over and over. I feel like life is over and there’s no hope and that I will eventually lose my husband. Like you all I’ve been trying so hard over the years to see every doctor possible to help with each part of my body that has gone wrong and nothing really has made a difference.

My chronic insomnia is a real issue as I barely get any sleep and can’t sleep in the day as I’m so hyper yet exhausted. A sleep neurologist recently recommended low dose Quetiapine and melatonin and then CBTi of course! I don’t like to take any more medication than I’m currently on but I’m literally in the gutter and feel suicidal tbh.

My pain is so widespread and I haven’t found anything helpful and I’ve tried all the usual neuropathic meds (most I can’t tolerate as my nerves are so twitchy and any increase in serotonin seems to affect me adversely) . I’m currently trying lamotrigine for the vestibular migraines and Botox but feel doubtful as nothing has helped so far.

Thank you if you’ve got this far and thank you in advance for any words of wisdom you have to share on any of this. I’m scared I can’t go on living in such turmoil.

 

[almost]

Oh my, @JadeD . I can't imagine.

I don't have any magic words or solutions. I too had Covid earlier this year, and now I'm starting to get headaches. Not as bad, but maybe I understand .01%. Maybe .001%. Hugs.

I read your whole post, and I must say you are going through an awful lot. I think your feelings are very normal and I would probably react much the same way. Wishing for a magic wand here. Do know, however, that you are very strong to get to even this point. You have fought and still have dreams.

The only word of wisdom I may offer is to think of what can get you to the next minute/hour/day. Maybe that's not watching the clock for one minute. Maybe that is messaging a friend here. I don't know, but rather than looking out over what looks like a hopeless horizon, a different choice may be to just look at one step, one thing you can do. Then take another.

Forgive me if I overstep or offend, please, I pray for a new hope for you.

 

[JadeD]

Thank you so much @almost for your empathy and understanding. I’m not sure if many people fully understand our suffering. My mum’s partner said I’ll be ok if I just get my “mindset right”. But I know I have lots of willpower and ambition but just a failing body which I continuously get frustrated at. My mindset is largely driven by my symptoms but I guess I could try a little harder to work on it.

Your advice is very wise to focus on what I can do and just take one step at a time. Not looking into the future and having the control I’m used to is something I need to adapt to. Sorry to hear you’re starting to get headaches too since covid. I do hope they aren’t too painful for you. Thank you once again it means a lot of have support when we feel so alone in all of this.

 

[BaileyBeached]

I am curious if your vestibular migraines get worse when there are storms. I ask because since hurricane sandy passed by my home I've struggled with mal de debarquement syndrome, which basically means it feels like I stepped off a boat onto dry land and it feels like the ground is moving. Treating my Lyme and coinfections, particularly bartonella help it. Also things they favor the gaba side of the gaba glutamate balance, so like taurine and magnesium. I've also found my anxiety and depression can be triggered by POTS issues like low blood pressure.

In answer to your question, I do experience symptoms similar to yours sometimes. I have severe mcas, and have recently been diagnosed with craniocervical instability and compression of my left jugular. I've been bedridden for over a decade. Recently during a period of high humidity and temperature my POTS has seemed to worsen a lot. I've been taking a lot more iv fluid trying to prop things up.

To my untrained eye, I think it might be worthwhile to get screened by someone knowledgeable for cranio cervical instability. I think there are a number of people on this forum who had it triggered by a virus and made incredible recoveries after treatment. I got screened but mine isn't significant enough to qualify for surgery, and they're now thinking many of my issues might be caused by my c1 vertebrae compressing my left jugular.

Apart from that @almost gives good advice taking it one day at a time. I remember one afternoon having a particularly bad time health wise and listening to one of my favorite sports teams losing a game super badly. But then they came back later and turned the game around. The commentator remarked, remember you've always got to play till end, and it stuck with me. I'm not sure if that helps, the future is uncertain, but people do come back from terrible places. Sometimes my moments of deep depression were fixed with something like midodrine to prop up my blood pressure.

Sorry I'm not very wise, but I will say I've been through many times where things felt completely hopeless and I was seriously scared I'd die. But life got better. This could happen for you too *hugs*

 

[JadeD]

Thank you @BaileyBeached all very wise advice. I’m so sorry you have been bedbound for so long and have to have IV fluids for your PoTS. I completely understand what you mean about Midodrine giving you a boost. Probably part of my anxiety and depression is an autonomic thing. My PoTS and leg pooling has massively worsened since covid. My PoTS triggers off the vestibular migraine I think and it’s a viscous circle. My mind is never clear now as it used to be which is a mixture of brain fog, lack of blood flow and migraine mechanisms.

I agree about the checking for CCI. I haven’t looked into where I can go for this in the U.K. I have scoliosis too and I’m a bit hypermobile but not much so I might be more prone to this despite MRIs being normal.

I think the weather does have something to do with it definitely when it rains and there’s a storm. My migraines are so frequent if not continuous so it’s hard to see a clear trigger. Sorry you have MDDS, I often describe my symptoms as like walking drunk on a boat like the floor is moving.

I’m glad you’ve been able to find some coping mechanisms for your feelings and have had the strength to keep fighting. I’m not sure where mine has gone. I think I’m just exhausted with trying to get better yet to get worse and lose so much again. The suffering itself is very hard to bare and distract myself from that’s where my joy in life has gone. Hopefully it will come back somehow. The first thing is addressing my insomnia. Fingers crossed. Thanks again for your help.

 

[lenora]

Hello @JadeD. I'm sorry that you've had to join PR, but you have received some excellent advice.

I would like to add to it, and you can choose whether or not to follow through. I have a lot of the same symptoms already written about, but I've been officially diagnosed since age 38 and I'm now 76, and a woman.

I won't go into my multiple symptoms, but I would like to add that I had kyphoscoliosis as a child and wore heavy braces and casts. I'm married and have two adult daughters and 4 grandchildren. I hope and pray that none of them will ever be victims of this illness.

The reason I'm writing is that I also suffer from anxiety and panic disorder....I mean the killer type. Yes, I have been in a mental institution and no, it's not the worst thing that ever happened to me. I was able to get out of it myself when at the beginning, but now it's beyond any control. There are many non-addictive drugs that you can take, starting with something like buspar. That doesn't work for me anymore and I was moved up to the big guns about 10-15 years ago. I take two low dose extended release xanax, morning & evening. They have controlled my situation and my amounts have never changed.

People wonder about suicide. Well, I can only speak for panic disorder, but there is only one though that goes on in your mind: Kill yourself, any way that you can. It's a tape that never ends and you are not in control....it is. I finally understood why some people do commit suicide....it's merely to stop the thought. No, we can't think about others and it's so far beyond our control that reasonable people could never understand it.

I'm doing very well in that regard and no, I'm not a hypochondriac. My husband believes me 100%, helps non-stop and that's good enough for me. This year has been particularly bad with a fall, osteoporosis, COVID and yes, those headaches. Mine are probably caused by allergies, sinus in particular, but no one can say with certainty. So decide what you want to do, but know that panic disorder isn't exactly uncommon among us.

I respect alternative medicine, tried vitamins for years but no, they were never the answer for me. Something was/is amiss in my brainstem and yes, insomnia is my constant companion. I have been tried on every med there is and my neurologist (now dead) and I decided years ago, that I'll simply have to live with it. That's what I do.....and usually after a number of days ranging up to 2 wks., I'll have some relief for about 3 nights. A pattern emerges. I'm sorry that you're as miserable as you are and yes, there are plenty of others who share your misery. I wish you better health. Yours, Lenora

 

[Mimicry]

I'm so sorry you have to go through all that @JadeD, I'm sending you hugs ❤️ I also have chronic daily migraine that was apparently triggered by covid in spring 2022 and worsening SFN though I'm still able to do some activities daily. They both flare up pretty badly during PEM. I'm afraid I don't have any advice since I'm also struggling to find solutions and it depends so much on what kinda meds you're able to tolerate, and based on what you say our neurotransmitter problems etc differ somewhat (for example, I do well on anything that raises serotonin).


I'm 34 and been ill with ME since I was 19, but it was mild for the first 13 years, and it all got so much worse after my first bout of covid 1.5 years ago. I just read some of my old posts on Instagram where I was so much better, had 400% the functionality I now have, but still complained about my OI symptoms and weakness. If only I'd known back then how much worse it can get...

 

[lenora]

That's too bad @Mimicry.

Yes, I look back on the past but also have to remind myself that I'm a whole lot older now, and the things we hear about drag me down at times. COVID was totally unexpected and the fatigue (with lack of sleep) is great.

Migraines can be impossible to put up with. I suppose they're all in our heads, too! Feel better & you may....you're still young. Yours, Lenora

 

[Mimicry]

That's too bad @Mimicry.

Yes, I look back on the past but also have to remind myself that I'm a whole lot older now, and the things we hear about drag me down at times. COVID was totally unexpected and the fatigue (with lack of sleep) is great.

Migraines can be impossible to put up with. I suppose they're all in our heads, too! Feel better & you may....you're still young. Yours, Lenora

Thank you ❤️ I'm starting Ajovy in a month and hoping it will help with the migraines and that in turn might help with the ME symptoms. Migraine is a terrible stress on the whole body and I wouldn't be surprised if it's making me worse.