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Severe anxiety caused by ms lesions !!!

Does anyone else get really severe anxiety caused by a lesion, i feel like i am loosing my mind with anxiety,and have read that ms lesions in that part of the brain can cause anxiety symptoms, i have told the neuro about this, but they seem to think that i am anxious because of the MS, and i cant get through to them that i think its a lesion causing the trouble,i have never felt as ill in my life,i get these attacks that feel like a massive panic attack,and i cant function at all,i try all the relaxation techniques,but these attacks follow an ms like pattern, but over the years have got more often, and more severe, i am thinking of taking the odd diazepam when they strike, i dont like tablets and try and avoid them,but i feel so very,very ill with this,just wonderd if anyone else suffers this feeling of loosing their mind, and if so can it get better.

jaki xx

Do you have a ms nurse you could discuss it with?

Other than that I cant help really,but i’m sure someone will come along with a productive answer.

I suspect if relaxation techniques dont work though you may have to bow down to a better quality of life with tablets rather than putting up with anxiety.

Hope someone can help you.

Pip

Hi,

From what I have been read/been told it is not the lesions that directly give you these problems.

We all suffer many difficult things with ms such as benefits, fatigue, mobility, continence etc , these can all take their toll. I ended up in hospital with a panic attack, more through not understanding what it was and not dealing with underlying problems etc! Even though my MS has become much worse since then, have got my “house” in order and not suffered a panic attack since. Biggest bit of advice is try and get everything in order, of course this is much easier said than done.

I have also found that you need to be wary of reading things on the internet. These days I take advice from a wide range of sources, GP, neuro, ms nurse, forums such as these etc. If you read things on the internet they can become a self-fulfilling prophecy.

In answer to your question yes you can influence these panic attacks , in my opinion it starts with ensuring you have a positive and relaxed attitude and have as much in order as possible. We are all so different so who knows what will work for you, but it works for me. Fingers crossed for you

Hi Jaki, I think there are times in life when drugs are incredibly useful. Maybe it’s one of those time eh?

I’m thinking particularly of Amitriptyline. The beauty of this drug is that it helps MS symptoms (pain, spasms, tingling etc etc) but it also helps anxiety and lifts your mood.

It is (you probably know this) an antidepressant usually prescribed in larger doses for depression. It sort of dampens down the central nervous system which is why it’s so helpful for MS.

I have found that even a relatively small dose or 35 mg a day (that’s 25 mg at night and 10 mg in morning) has not only helped my MS symptoms but has really helped my anxiety levels a lot.

It would be worth giving it a try Jaki, after all, if you don’t like it after first few weeks you could always come off it again.

There are some good drugs out there and even though it’s great to try and remain drug-free, it’s also putting yourself through hell when there are drugs that can help.

One more thing, I think personally there are a whole bunch of things that are caused by lesions but getting a neuro to agree with you is practically a waste of time. We KNOW it is our MS causing these things, but a neuro won’t agree until the have scientific proof.

Pat x

Interesting post.

At the moment I’m struggling with physical problems - a weakened right side of my body. It will pass and given time things will improve. However I feel very depressed/anxious. This depression/anxiety is not because of my physical problems but something quite different. I believe that a lesion or dmamge to the myelin has caused the physical problem and damage in another part of the brain has caused the depression/anxiety.

The possibility that depression, anxiety etc. may be due to a physical cause is a very challenging concept for the neuros/psychiatrists!

Hiya

Yup. I had a bit of anxiety last year. Waking up in the night, thumping heart, feeling sick, burping some times for no reason at all! Still I was under extreme pressure over a house sale/buying.

I took a low dose of Pregabalin to solve a few symptoms and anxiety was resolved. Now I’m testing myself by slowing coming off it to weigh up the benefits to side effects.

Marty

Hi Pat, you know you could have something there.

i`ve been on 75mg amitriptyline, at night, to stop severe nerve pain in the back of my thighs and bum cheeks. It works!!

But people here and elsewhere, often tell me I have a good positive outlook and it also helps them with their lives. If it is the ami…then yeh, what a great drug, eh?

luv Pollx

Hi Jaki, so sorry to hear how this is affecting you. Wanna read my reply to PatB on your post? Makes you wonder, eh?

Maybe Rizzo could answer your query about where lesions are and how they affect us? Why not pm her?

luv POllx

Jaki, no matter what neuro says, anxiety & depression can be caused by ms lesion and the fact ms brings with it uncertainty. My goodness I thought the world had moved on where medics were more understanding of peoples plights.

You know your own mind - I know for a fact my anxious or elated state and deep depressive moods were ms related as Im fine now, although I am taking amytriptiline.

I was told I wasnt acknowledging my ms - more like blaming the patient for something organic which cannot be changed but can reduce when relapse abeits.

bren

xx

Hi Jaki,

Yes, I have had some terrific bouts of panic, and like you, my doctor prescribed tranquilizers, but as these also make my MS symptoms worse, instead I asked for beta blockers, which have been a true life saver with me. I KNOW that I just could not function without them. The ones I was given are Atenolol and they are fantastic. Yes, MS can leave scarring in any area of the brain or spinal cord, so it just depends on the whim of the disease as to which part of this that it attacks. It must have taken two (?) years for my symptoms to be believed by my GP and I know JUST what you mean. I could feel so panicked that I felt as if everyone around me (such as in a shop or surgery) were wanting me dead! - bizarre symptoms. My hair felt as if it was standing on end too, like a character in a child’s cartoon. I believe that this symptom is one of the less common ones, but all syptoms should be taken seriously. I felt incredibly lonely when I was given to believe (wrongly!) that my symptoms were ones that only affect me. You might like to ask your GP to refer you to a neurological psychologist too, as these people really do understand.

Good luck, and you are NOT alone.

Best Wishes,

Moira

No you really are not alone. I am still undx but the Beta blockers are really working for me. I had a panic attack during my last visit to the Neuro which was good in some respects because she changed them to Alprazolam to help with panic attacks and my tremors too. I put a post up recently because she then decided to send me to mental health but he seemed to have zero knowledge of MS ( if that’s what I’ve got ) so was totally unhelpful. BUT in a strange way it has had a positive affect because I really don’t care what he says because 2 admissions to hospital and the symptoms I have can’t be disputed. At least the sensation of being on a runaway train both physically and mentally have calmed down so see if you can give them a go xx

Hi Jaki, I have the same problem, very anxious, tearful, severe depression, etc., for about two years now. I am not sure if it’s where the lesions are,or the impact of MS on me personally, or both. Anyway I was referred last year to a neuro pyschologist who knows all about MS and has been very helpful. I take meds including amatryptalline and citalapram anyway, but it was seeing the neuro pysch. that made the difference. My neuro and MS nurse referred me, but maybe your GP could referr you if the neuro is not helpful. Have you seen your nurse or spoken to her ? I think that referal saved me really as I was sucicidal then and although it doesn’t go away completely, it is much better and easier to live with, and I can see her whenever I like now, although haven’t needed to lately.

Thinking of you, love.xxjo

Yes I am so very bad they have put me on CAB as I have suffered with OCD since I was 6 years old and the MS is making thing impossible to get by at all…
CAB is very good for relaxation and really helps me open my eyes on how to calm myself when times are really bad

Sorry that is CBT oops. Congnitive behavioural therapy

Whether caused by lesion or mental health problems such as health anxiety or depression etc, treatment to alleviate symptoms requires meds and CBT . This works!!! After aperiod of time you may be able to stop meds, sometimes you need to stay on them. Meds for anxiety and depression have fewer severe side effects than dmds for so don’t worry bout them. I have taken beta blockers for 9 months now and also having CBT for last six months, both are being reduced now and hope to come off them altogether soon. Won’t panic if need to stay on minimum dose of betablocker or use very small dose of diazepam when necessary as am confident I am in control not the meds. CBT is a fantastic help and developing your own coping strategies is very empowering, it makes a great difference. Alongside the bloody awful fatigue , anxiety is a horrid symptom to put up with, the severity of it is not appreciated by anyone who’s not experienced it and getting in control of it by whatever means necessary is absolutely essential. Good luck and don’t be scared to use a trial n error approach to find what’s best for you. X

Thanks very much for all your advice,i am going to ask my ms nurse to refer me to the neuro phyciatrist for CBT and to look at upping my antidepressants,i am already on them, but think the dose may need altering,it just overwhelmsme at times,but as always i have found the support i need on here.Thanks again guys.

jaki xx

hi jaki…im new here, i would just like to say that i have suffered similar attacks and it affected me like an over whelming tiredness and a feeling of being anxious. it made walking or doing any thing really, very difficult,but thankfully its passed now ,so maybe it could be a new legion. i dont have a dx of ms.

I’m angry the whole time. Everything is done deliberately to annoy me! I never used to be like this, very rarely got het up. But now I feel constantly bad tempered. I’m not depressed. I still laugh, I still want to get out and about, I’m sure its related to my MS although I do wonder if sometimes its become a habit. I got really low when I was relapsing almost constantly, not depressed but just fed up I couldn’t do what I wanted. Its when it started. But now things are starting to look up, relapses seem to be under control with Ty, I don’t know why I still feel like this. Its like having permanent PMT.

Jaki, my heart goes out to you. You and I have talked a little about this. I don’t have an MS diagnosis but I do have spinal cord problems from a probable hereditary neurogenetic disorder.

I’m sure I’m having episodes of autonomic dysreflexia. What you described to in a private messagesounds exactly like what I’m having. They can sound like panic attacks, but they’re not. It first happened to me twelve years ago and I couldn’t get my GP or an MS specialist to understand. I had a UTI, my GP picked up signal changes on an ECG. I was referred to a a heart specialist and of course he couldn’t find anything wrong.

These episodes have become more frequent this year and have left me in a constant state of anxiety. I don’t like being left alone as when they happen they are so frightening. I’m left alone most of the day and now my daughter drops me off at a relatives at 7.30 am so I have people around me. I’ve found that UTI’s, bowel impaction, piles, severe reflux can all set it off.

i get a feeling of doom, severe spasms, sweating, icy cold hands, blurred vision, awful pain and spasm inmy neck. I’ve found I’ve got to try and work out the problem and try and sort it out. I also get on the bed and prop myself upright with pillows.

Autonomic dysreflexia is common in spinal cord injuries but can happen in MS if you have spinal cord lesions. What you have said to me previously it could be worthwhile asking to be referred to an autonomic disorder specialist. Not many Dr’s know what autonomic dysreflexia is.

I’m now anxious all of the time just waiting for it to happen again and dreading it. if you want to talk you know where I am.

Jacqui xx

Jacqui- I’ve pm’d you. The feeling of ‘doom’ is a sign of another condition entirely, which the medics are sure that I have, pheochromocytoma. I sent you a link to provide more info.

best wishes,

K