Nin

I'm really sorry you're going through so much right now. I also have seizures and I also feel them coming. It came out of the blue a year ago. 

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.

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!

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.

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.

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?

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. 

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?

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).

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

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. 

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?

Yeah I suppose they do need to see my average score when I feel rubbish so they know what medication to try. 

It would have probably been better to have a 24hr monitor 

I'm due a telephone consultation to discuss trying some medication to help. But they told me to write my BP down and how I'm feeling. Problem is it changes from lower end and going to the higher end. So if they put me on something to raise BP what if it goes too high. Also my BP don't always mean the same. One day it might be lower end and feel fine and next time its lower I might feel terrible. So for me its not an indicator of my symptoms. I don't know whats making me feel so symptomatic. 

Oh this was me back a year ago. I just had a siezure out of the blue. Went to the hospital and the jerking and involuntary movements i just could not stop. Its was frightening! I still get them to this day and its a warning a siezure is coming. They said they are non epileptic. About 5 months after I was diagnosed with pots. Not one doctor has said this is pots related, but I believe it is. I just think its a rare symptom of pots. Another thing I read the other day is mast cell activation syndrome can cause siezures so that's another thing I would like to rule out. I struggle the most with these siezures because I've lost so much freedom because of them. I hadn't had one for 4 months and then the other day over exercised then had a siezures about 5 hrs after! 

Has anyone tried sodium chloride and did it help?

Yeah get a digital blood pressure monitor, those wrist ones are inaccurate. 

I'm from Wales and unfortunately had to pay private for a tilt table test as I knew I would still be be sat here waiting because of covid. My GP did refer me but they just won't put it as urgent. I paid £750 for tilt test and then consultation afterwards. After that I paid again to speak to Dr Gupta as he is highly recommend and I think he just forgot about me. So I have now just got an appointment through the NHS and a specialist nurse is in contact with me and hopefully going to try new medication. She did say they are not even doing tilt table test now, but obviously I paid to have it already so I've cut that out. To be honest getting a answer how you got it in the 1st place is probably highly unlikely unfortunately. I think we have only 1 place in the UK where they do extra testing  and again your GP or a consultant got to refer you. It's such a long drawn out process!

21 hours ago, Pistol said:

@p8d, @Lisa C -  be better soon!!! Best wishes! 😉

It's just ???? All the time. I'm always questioning why why why. Now I know we just don't have the answers most of the time....it is what it is. I tell myself "you just got to ride the storm" I just hate it when I know the storms coming. I try to stop things happening, but I also have get on with everyday life i.e cooking, cleaning. I was doing really good for about 2 weeks, cleaned the house and then felt rotten since. Acceptance really is hard to accept! But I suppose we got no choice. Keep going like you do!

My eyes are a big big problem. I feel I'm constantly on a boat! I can't seem to focus on anything and if I do I feel like I'm swaying very fast. So looking at my phone, talking to people (making eye contact) I'm struggling with. The lights in the supermarket are terrible also

10 hours ago, cmep37 said:

Sorry forgot to finish this sentence!  Anyway the optometrist suggested it could be caused by compression of one of the cranial nerves.  I know there is a theory that some cases of POTS are linked to high intracranial pressure which could compress cranial nerves.  Or my very lax neck due to hEDS could also be compressing a nerve.  

Does your focus on an object improve after blinking?  For me blinking seems to very temporarily reset the wandering eye and allow me to focus although it's only a few seconds until it takes off again!

I'm not sure if blinking helps. I tend to close my eyes and look back at whatever I was focusing on just to rest them and that seems to help.

3 minutes ago, yogini said:

Have you looked into nystagmus?  Dizziness is often connected to the eyes.  I'm surprised an inner ear specialist wouldn't know about this.  I was sent to vestibular therapy which was to work on correcting nystagmus.  Typically the cause of nystagmus is not related to POTS

I did ask her about nystagmus but she said no it doesn't look like nystagmus

This eye problem seems to be a common thing with pots I guess. 

1 hour ago, Chocolate said:

I get very dizzy when riding as a passenger in a car on the highway, especially if I look at cars moving the other direction and even cars on my side. It’s worst if I haven’t been on the highway, driving fast for weeks. At first, I took a non drowsy Dramamine and that mostly solved the problem. I also asked the driver not to keep speeding up and slowing down...that made me feel about to faint!

 I found out I was having proprioceptive problems - where your eyes and ears are giving different info to your brain about where you are. The exercises I do to combat this problem include 1) Looking to a spot about 3 feet in front of me. Then move my eyes (keep head still) to a specific spot on the left, and then to a specific dot on the right. Work up to 20 times. 2) Now, moving your head, look to the left dot and then move your head to the right dot. Work up to a fast pace and 20 times. I do #1 and #2 sitting down. 3) I walk in a straight line forward through the house. I repeat until I’m either dizzy or getting good. 4) I do the same, but walking backward. 5) I stand on my left foot for 30 seconds. 6) Then I do it with my right foot. 
 

I hope this helps someone! This is my first post. 

Thanks for that! Everything you just said is my homework they gave me after I went for a vestibular function test. Even thou she said it doesn't seem to be coming from my ears (surprising enough both been operated on) she told me to still do the exercises. I hope they don't make me worse

9 hours ago, Pistol said:

My sisters - who have HPOTS - have severe vision problems related to the dysautonomia. They were diagnosed with a condition that causes one eye to be directed to the side rather than focusing in the middle ( sorry, I forgot the name of this condition ). It causes symptoms as you describe, mainly difficulty focusing - trying to focus on a computer for example causes an adrenaline spike for them. They tire out easily and get overwhelmed easily by fast movement around them, too. 

When you do speak to your sisters would you be able to ask the name of the condition? I did have a vestibular function test the other day but not sure if I was in the right place for what is happening. Nothing showed up with that. Nothing worse when something affects you so much and they say no couldn't find anything!