Anyone here experienced siezures from mcas?

[Nin]

I've been having seizures over a year now. I've just made the discovery that eating peanuts causes me to have a siezure. It happens within 10 mins. I've read online you can have non epileptic seizures from mast cell activation syndrome. I have pots and I know it is common to have mcas with pots.

I seem to have these seizures after a hot bath, exercise and walking round too much and certain food.

If you do have mcas.....what triggers you?

What are your symptoms?

[Muon]

Not diagnosed with MCAS but I suspect it's playing a role in my symptomatology: Case description

No seizures though. One of the worst triggers is release of (pre)ejaculate.

[kim.thomasin]

Just diagnosed with both POTS and MCAS. Have no idea what's happening internally and I've very very scared. Why would MCAS trigger seizures?

 

When they happen I have full body convulsions, shaking, stuttering, hot flash, dizziness, lightheadedness, confusion and a sense of being out of my body.

[Pistol]

Hello @kim.thomasin - welcome to the forum!!!!! I have HPOTS, no MCAS, but I do take autonomic seizures ( also referred to as convulsive syncope ). The symptoms you describe are very similar to what happens when I take a seizure from POTS. I also get extremely cold hands and feet before them. 

3 hours ago, kim.thomasin said:

Why would MCAS trigger seizures?

IMO it is maybe not the MCAS that triggers the seizure but the POTS. Most POTS related seizures are due to excessive vasoconstriction, which stops blood from going to the brain. This can cause syncope but if sudden and severe it can trigger a seizure. For me what has helped the most to prevent them are medications that dilate the vessels ( like calcium channel blockers ), regularly scheduled IV fluids ( helps to keep enough volume in the vessels to prevent constriction ) and a carefully balanced routine of exercise and rest. I used to get seizures and syncope several times a week, even daily, and since I had a port implanted over 2 years ago and now can have IV fluids whenever needed I have maybe 2 seizures a year - all triggered by illness or other unexpected stressors.    Here is a lecture about this from last years Dysautonomia Conference: 

https://vimeo.com/355131309?fbclid=IwAR1HkfPxY4OlW5TH2mmfue-DanVyWuz1axXJccA3S5RcwFnoPKnfTorCofc

[kim.thomasin]

Thank you SO MUCH for this information. Will discuss with my cardiologist at Cedars Sinai. I'm glaf to know I'm not alone in experiencing this. I will look into the information you provided. 

[toomanyproblems]

Can people describe exactly what happens with these likely autonomic seizures?

[Nin]

4 hours ago, toomanyproblems said:

Can people describe exactly what happens with these likely autonomic seizures?

With me either my lips start tingling or my eyes start flickering, then my body starts jerking and then whole body tenses and starts fitting 

I spoke to a consultant today regarding pots and he said "you can't get seizures from pots" which i know you can! I'm just looking into mcad as I've read you can get them from this and as I reacted to food I thought its worth checking. Its not just seizures, I constantly got a sore throat, I keep getting red spots on my face that come and go, burning legs/arms. 

[Nin]

14 hours ago, kim.thomasin said:

Just diagnosed with both POTS and MCAS. Have no idea what's happening internally and I've very very scared. Why would MCAS trigger seizures?

 

When they happen I have full body convulsions, shaking, stuttering, hot flash, dizziness, lightheadedness, confusion and a sense of being out of my body.

I don't know why mcas would cause seizures. I've read a few stories and articles online about mcas causing seizures. They call them pseudosiezures (not sure if thats just in the us) because they are non epileptic. When it happens to me I slurr my speech.

 Im from the UK and this is a story from our main newspaper of a girl who had seizures 

https://www.dailymail.co.uk/health/article-5581213/The-woman-eat-rice-vegetables.html

[Nin]

11 hours ago, Pistol said:

Hello @kim.thomasin - welcome to the forum!!!!! I have HPOTS, no MCAS, but I do take autonomic seizures ( also referred to as convulsive syncope ). The symptoms you describe are very similar to what happens when I take a seizure from POTS. I also get extremely cold hands and feet before them. 

IMO it is maybe not the MCAS that triggers the seizure but the POTS. Most POTS related seizures are due to excessive vasoconstriction, which stops blood from going to the brain. This can cause syncope but if sudden and severe it can trigger a seizure. For me what has helped the most to prevent them are medications that dilate the vessels ( like calcium channel blockers ), regularly scheduled IV fluids ( helps to keep enough volume in the vessels to prevent constriction ) and a carefully balanced routine of exercise and rest. I used to get seizures and syncope several times a week, even daily, and since I had a port implanted over 2 years ago and now can have IV fluids whenever needed I have maybe 2 seizures a year - all triggered by illness or other unexpected stressors.    Here is a lecture about this from last years Dysautonomia Conference: 

 

Hey pistol 

Spoke to my pots consultant today and he said pots can't cause seizures! It's so frustrating because it makes you think they don't know enough to  help or they don't want to even think well yeah possibly if you haven't got enough blood flow that would happen. Again I suggested mcas and he said no its extremely rare you wouldn't have that. He said its people who have eds have that. It just makes me not want to deal with them (doctots).

[Nin]

15 hours ago, kim.thomasin said:

Just diagnosed with both POTS and MCAS. Have no idea what's happening internally and I've very very scared. Why would MCAS trigger seizures?

 

When they happen I have full body convulsions, shaking, stuttering, hot flash, dizziness, lightheadedness, confusion and a sense of being out of my body.

What causes this reaction for you? Is it food or a number of things?

[Pistol]

12 hours ago, Nin said:

Spoke to my pots consultant today and he said pots can't cause seizures!

Well - you should provide the link to the speech about POTS and seizures I posted earlier on this thread!!!!!! That'll set him straight!!!!

 

12 hours ago, Nin said:

Again I suggested mcas and he said no its extremely rare you wouldn't have that. He said its people who have eds have that. It just makes me not want to deal with them (doctots).

What is wrong with these people? And he is your POTS CONSULTANT??? 😲 -- I don't know how it is in the UK, but here in the US I would report that doctor!!! He should not be allowed to treat people with Dysautonomia. Is there a number you can call to report a doctor? He needs to be told to educate himself about POTS if they allow him to treat that condition. I would also use this as proof that you have to see a real POTS specialist. If you need more literature proving him wrong just PM me!!!!!

[cmep37]

@Pistolthis is pretty typical of the UK!  POTS patients tend to get foisted on to EP cardiologists who have absolutely no interest in POTS and don't want to educate themselves!   As far as they are concerned POTS is not life threatening, therefore you are far less important than their usual patients who require pacemakers etc never mind how badly POTS impacts on your life.

@NinHave you had a look at the POTS UK website?  This was where I found the consultant who diagnosed me- at least anyone listed in the site has an interest in POTS and some knowledge of it.  Your current consultant is clearly neither able nor willing to help you so maybe he would be willing to refer you to someone who is!  

[Nin]

On 11/3/2020 at 6:09 PM, cmep37 said:

 

@NinHave you had a look at the POTS UK website?  This was where I found the consultant who diagnosed me- at least anyone listed in the site has an interest in POTS and some knowledge of it.  Your current consultant is clearly neither able nor willing to help you so maybe he would be willing to refer you to someone who is!  

Yes I have been on pots UK. This where I found the doctor who diagnosed me. Maybe I should have stuck with him, he was private though and expensive. 

[Nin]

On 11/3/2020 at 11:05 AM, Pistol said:

Well - you should provide the link to the speech about POTS and seizures I posted earlier on this thread!!!!!! That'll set him straight!!!!

 

What is wrong with these people? And he is your POTS CONSULTANT??? 😲 -- I don't know how it is in the UK, but here in the US I would report that doctor!!! He should not be allowed to treat people with Dysautonomia. Is there a number you can call to report a doctor? He needs to be told to educate himself about POTS if they allow him to treat that condition. I would also use this as proof that you have to see a real POTS specialist. If you need more literature proving him wrong just PM me!!!!!

Maybe I should send him that link. They get really crappy with you if you try telling them. 

I think they believe that you can get seizures but after fainting. I don't faint then have a seizure, I just have a seizure. Is that also the case with you pistol were you having just a seizure? Also did you ever get set off by eating food?

[Pistol]

Yes, @Nin, for me syncope and seizures are different. And when I seize it is like a grand mal seizures, this was witnessed tons of times by medical professionals and also caught on EEG. But no - I cannot remember food ever having triggered a seizure. But that does not mean it can't - eating can stimulate the ANS, especially in dysautonomia. 

[Nin]

4 minutes ago, Pistol said:

Yes, @Nin, for me syncope and seizures are different. And when I seize it is like a grand mal seizures, this was witnessed tons of times by medical professionals and also caught on EEG. But no - I cannot remember food ever having triggered a seizure. But that does not mean it can't - eating can stimulate the ANS, especially in dysautonomia. 

Yes syncope and seizure are different. I wonder 🤔 if eating also is triggering the ANS.

[cmep37]

39 minutes ago, Nin said:

This where I found the doctor who diagnosed me. Maybe I should have stuck with him, he was private though and expensive. 

I completely understand - I paid privately to see the only consultant who specialises in POTS in Northern Ireland and he diagnosed me and set me up with a treatment plan consisting of the standard POTS drugs.  He told me he couldn't treat me on the NHS as I don't live in the right area and referred me to a colleague.  Once I'd tried all the drugs on his treatment plan without any success my NHS consultant wrote to him, telling him he didn't have enough experience to treat me and asking him to take me on as an NHS patient.  He just wrote back saying the NHS trust won't allow him to treat any more POTS patients that live out of area and that whilst I could see him privately, he didn't see there was any point as there was nothing else he could suggest either!  This was when I started researching consultants in the UK and the USA! I'm seeing my GP tomorrow to chat through my options - I'd ideally like to see Dr Blitshteyn a neurologist for New York who is doing phone or Zoom consultations for very little more than I'd paid my private consultant but there is not much point seeing her if my NHS GP wouldn't be able to prescribe her suggestions....

Could you ask your NHS consultant to refer you to the consultant you saw privately on the NHS as you are a complex case?  Of course that probably means waiting ages - I've been waiting to see a consultant about my EDS for 4 years now!  Or are there any neurologists who might help given you are having seizures (I assume you're seeing a cardiologist for POTS)?

[Nin]

5 hours ago, cmep37 said:

I completely understand - I paid privately to see the only consultant who specialises in POTS in Northern Ireland and he diagnosed me and set me up with a treatment plan consisting of the standard POTS drugs.  He told me he couldn't treat me on the NHS as I don't live in the right area and referred me to a colleague.  Once I'd tried all the drugs on his treatment plan without any success my NHS consultant wrote to him, telling him he didn't have enough experience to treat me and asking him to take me on as an NHS patient.  He just wrote back saying the NHS trust won't allow him to treat any more POTS patients that live out of area and that whilst I could see him privately, he didn't see there was any point as there was nothing else he could suggest either!  This was when I started researching consultants in the UK and the USA! I'm seeing my GP tomorrow to chat through my options - I'd ideally like to see Dr Blitshteyn a neurologist for New York who is doing phone or Zoom consultations for very little more than I'd paid my private consultant but there is not much point seeing her if my NHS GP wouldn't be able to prescribe her suggestions....

Could you ask your NHS consultant to refer you to the consultant you saw privately on the NHS as you are a complex case?  Of course that probably means waiting ages - I've been waiting to see a consultant about my EDS for 4 years now!  Or are there any neurologists who might help given you are having seizures (I assume you're seeing a cardiologist for POTS)?

Its really is scary when you've tried so much and it's not helping. You think is anything going to help me. Yeah that's the problem with a doctor out of the UK, you can't get the medication. America got way more to offer than the UK. 

I get the feeling the doctor i seen privately wants to keep my appointments with private care as he could offer to take me on through NHS....more money for him. 

Basically the neurologist who I seen said the seizures were functional neurological disorder and I don't agree. I've had a eeg and that was negative for epilepsy. So these seizures are non epileptic, but so many different illnesses out there that can cause non epileptic seizures (I.e pots) she didn't test me for anything. The tilt table test i sorted out and it was actually my gp who suggested pots. I was in hospital for 9 days and not one doctor said this could be something called pots....even though I was reacting every time I stood up.

I can't believe you've waited 4 yrs to see someone for eds! 

Just got to keep fighting I suppose and eventually something will work.

 

[Ashc]

4 hours ago, Nin said:

Its really is scary when you've tried so much and it's not helping. You think is anything going to help me. Yeah that's the problem with a doctor out of the UK, you can't get the medication. America got way more to offer than the UK. 

This apparently is the case. 

[Pistol]

@Nin - in the following article ( posted by another member previously on the forum ) focal autonomic seizures are explained and discussed in the neurology section of the article: 

 Postural Tachycardia Syndrome A Concise and Practical Guide to Management and Associated Conditions

[Nin]

On 11/6/2020 at 10:23 AM, Pistol said:

@Nin - in the following article ( posted by another member previously on the forum ) focal autonomic seizures are explained and discussed in the neurology section of the article: 

 Postural Tachycardia Syndrome A Concise and Practical Guide to Management and Associated Conditions

Thanks pistol. Loads of good info on here!

[cmep37]

On 11/6/2020 at 12:08 AM, Nin said:

I was in hospital for 9 days and not one doctor said this could be something called pots....even though I was reacting every time I stood up.

Probably cos none of them had ever heard of it!!  Before I read about it myself and realised this was what was wrong with me, I had seen 3 rheumatologists, 1 neurologist, 1 clinical psychologist, 2 gynaecologists, a dermatologist and 2 gastroenterologists none of whom suggested I might have POTS or EDS.   None of the GPs in my practice or even in my area knew anything about it (they do now!! - my own GP has a patient who's granddaughter was initially diagnosed with ME but after chatting to my GP they got her a TTT and low and behold - POTS!)

My GP was quite helpful - she said that she would happily prescribe me anything that was a drug recognised in the UK (nothing experimental but anything off-label was OK with her) on a trial basis initially and if it worked then long-term.  We discussed IV saline though and even if a US consultant would prescribe it, she didn't think I could get it - A&E wouldn't do it on a regular basis, district nurses are only allowed to do sub-cutaneous fluids which she didn't think would be any better than drinking in terms of peeing them back out so I'd still need a consultant to authorise a PICC line which she didn't think would be possible as they'd say the risks of infection etc were too high.  

 

[Nin]

8 hours ago, cmep37 said:

Probably cos none of them had ever heard of it!!  Before I read about it myself and realised this was what was wrong with me, I had seen 3 rheumatologists, 1 neurologist, 1 clinical psychologist, 2 gynaecologists, a dermatologist and 2 gastroenterologists none of whom suggested I might have POTS or EDS.   None of the GPs in my practice or even in my area knew anything about it (they do now!! - my own GP has a patient who's granddaughter was initially diagnosed with ME but after chatting to my GP they got her a TTT and low and behold - POTS!)

My GP was quite helpful - she said that she would happily prescribe me anything that was a drug recognised in the UK (nothing experimental but anything off-label was OK with her) on a trial basis initially and if it worked then long-term.  We discussed IV saline though and even if a US consultant would prescribe it, she didn't think I could get it - A&E wouldn't do it on a regular basis, district nurses are only allowed to do sub-cutaneous fluids which she didn't think would be any better than drinking in terms of peeing them back out so I'd still need a consultant to authorise a PICC line which she didn't think would be possible as they'd say the risks of infection etc were too high.  

 

Shocking isn't it! To be honest I think you get more joy from your GP. 

Yeah they are very reluctant to give iv fluids because of infection. Funnny when I came out of hospital last October after having a operation for endometriosis I felt good walking out of there. I said to my mum what must they have given me because my head feels so clear and im not dizzy. Surely that's what I had iv fluids during op. It will be yrs before they offer that here.