Nin

16 hours ago, leminisor said:

Wow I’m sorry you’ve been dealing with that! Did they figure that the seizures were directly pots related?

The visual issues are so uncomfortable and make me feel uneasy pretty much all of the time to some extent. Would you say your symptom is pretty much the same as how I described? It’s so difficult to explain to anyone who hasn’t dealt with pots! Even then, I’m really unsure what can even be done about it.

 

 

No one has said why I get these siezures. I had 3 operations in the space of 9 months and started having siezures after the last operation. I was feeling more and more unwell after every operation and then diagnosed with pots. The siezures I get are usually when I've pushed myself too far and my eyes start flickering fast and I start fitting for about 2 mins. I had them when I had my tilt table test. With my eyes and not being able to focus on things I don't know if that is sort of a siezures thing or they are just not functioning properly.  Anything that's flashing in my eyes make me go weird, when I had a EEG done my eyes were jumping all over the place along with my body. But the EEG showed negative for epilepsy and i was sure it would be positive. I just feel so uncomfortable talking to people as I don't won't to focus on their face. Typing this to you now is making me dizzy and I tend to close one eye because my eyes are so strained. Once it starts the dizziness/head swaying feeling I deal with this all day everyday. I believe this is pots related as the autonomic nervous system controls your eyes as well and something is just not functioning properly. My gut is something like binocular vision dysfunction. But I don't know who you would see to test for this

Just posted the exact same thing as you on here about 4 days ago! My eyes are a nightmare for me. I struggling to focus on anything e.g. making eye contact when talking, reading. I avoid so much because once I do start focusing my head starts spinning. I actually started having siezures since November 2019, these are non epileptic siezures and started when my pots symptoms got worse. I had a vestibular function test the other day but nothing got picked up. I'm wondering if this was even the right place to have this problem checked out.

I have terrible trouble with my eyes, especially when I need to focus them. As soon as I focus my eyes e.g talking to someone, looking on my phone, reading, my eyes feel googly and I get real dizzy and stay that way. I had a vestibular function test today and she said it's not my inner ear. She tested my eyes and only said my right eye was flickering at the end but that's it. I felt disappointed coming out with no answer again to another disabling problem I have. Did I even go to the right person if I'm having dizziness caused from my eyes? Is this a common problem with dysautonomia? 

On 7/8/2020 at 3:18 AM, Allanpreston said:

Wow I’ve been dealing with this for years, iv’e taken lots of antibiotics thinking it was sinuse problems. It’s good to come across this sight. My life is virtually non existence , I can’t do any thing. Pryor this I was strong and full of life a landscaper by trade. Now I only sit.anyone nave a remedy. Boulderstone

I've had this pressure in my ear from standing for about a year. Initially I thought it was my ears playing up but for me it almost feels like the bloods not getting to head quick enough and that's why I get this whooshing sounds. Got constant ringing in ears as well

Wow pistol it sounds horrific! I can't believe what it done to you. It's crazy just taking medication to help another problem your body would react so bad. Hope you start to feel better and find a alternative medication.

5 hours ago, Pistol said:

@cmep37 - I too have really hard suboccipital muscles AND a rib that keeps dislocating!!!!!! --- The exercises that help the most are 

- what I call the chicken walk: sit down, relax shoulders with arms hanging down and back straight, move head forward and then pull it towards your spine, without moving your shoulders ... it will look goofy, like a chicken!!!!

- move right ear towards right shoulder, hold it, bring back up, repeat 10 - 20 times then switch side. 

- Move head all the way back, as if you are looking up at the sky, hold it, move back straight; then look down at your toes, hold it, move back. Repeat 10 - 20 times. Do not move shoulders while doing this. 

- Lie on back, knees up, feet firmly on ground. Lift head, chin to chest, hold and release, repeat.

I also use a rowing machine when able and that really strengthens the neck and shoulder muscles for me. I only can do a few minutes every few days but it helps. 

For the rib I learned how to put it back in by stretching from my chiropractor.

Thanks pistol for that. I've actually just bought a rowing machine. I'm only doing 4 mins at a time. Is it ok to use everyday do you think? My partner said you're not suppose to exercise everyday, but I thought 4 mins a day would be ok. It's actually surprising how many people get sore throats and this is not on the list of symptoms with pots. Actually I think most people don't realise it's part of pots.

I've been feeling breathless for about a week now. This is something that comes and goes. I can have months of not feeling like this and then it's back again. It's like I can't get enough air into my lungs

Also I've been getting sore throats since November 2019. Do anybody get sore throat on and off. Always seem to get it when I'm having bad day's

Morning's are bad for me too. I just wake up feeling rubbish everything morning. After a coffee (which seems to help me) I feel like I can function a bit better, until I start pottering and back to square one again. So I lay down and just feel terrible still. I think if I lay I'll feel better and I can get back up again. I just lie there thinking well if I can't even lie without feeling so bad what do I do!

I've had problems with my eyes for over a year. I cannot read a book, looks at a screen without me spinning out. Once I do look at my phone or try to read something it happens and that's me spinning all day! So I only look at my phone at night when I know I'm going to be going to bed soon. Even talking to people really strains my eyes because I have to focus to look at them. Dry eyes I have as well. This is something I need to check out. I did have a vestibular function test appointment but they cancelled it because of covid. Hoping it will eventually shed some light on it. 

1 hour ago, Notwhattheyc said:

I have a POTS flare up now for 9 weeks. I think the stress of lockdown, work and school is what set it off. I have been miserable. Prior to this incident, I hadn’t had a flare up in 10 months and that only lasted 3 days. Hope to get better soon. The doctor keeps saying I will, but I am frustrated. I truly feel with everyone in this situation.

That's what I was thinking today it must be a flare up. It's been nearly a week I've been feeling this bad. I mean the best of times are terrible, but this past week has been horrific. 

Do you ever get a certain time of the day you just may get a spurt of energy and are able to actually do things? I had that today. I was in bed for about 2 hrs I just couldn't get up and then later on pottering thinking what happened earlier and how am I able to to what I'm doing now ok. I'm just constantly trying to figure it out in my head!

I have pots but not sure yet if hpots. My blood pressure is generally on the low side, but it jumps up like you described. When this happens I start shaking and I also have a siezure like pistol described (don't worry siezures are really uncommon). When this first started happening I was really scared but I know I'm not in danger now, so it's just annoying for me now. Funny when this happened the other day I put my legs on the wall and my blood pressure went back down within a minute. 

42 minutes ago, Pistol said:

@Nin - the Ups and Downs of POTS are ( unfortunately ) part of the deal. It took me years to understand that feeling good does not mean I am cured - and getting bad again after a good spell does not mean this is it from then on. There are so many triggers that can set us off - weather, diet, heat or cold, stress, illness, too much or not enough exercise, allergies, overstimulation … the list seems endless 😕! I kept a diary of my days for a while and figured out some of my triggers. There are different ones each season - right now it is insect bites and allergies, as well as heat intolerance.  And sometimes I can just tell that after 3 good days I am due for some bad ones soon … the trick is to enjoy the good days and be hopeful on the bad ones. Hang in there 🤗

I just bought a diary, I will start writing. I think I need to learn to accept my condition, but I just can't.  Maybe I will one day. I think if you learn to accept, the bad day's won't feel so bad. Then like you said enjoy the good days. No problem here with insect bites....it's pretty cold at the moment 😟 

Well I did speak to Dr Gupta after so hopefully when I do get more medication I will feel a lot better. Thank you 😊

Just wondering if anyone can answer this. I had 4 decent days (hardly any symptoms) and then the past two days have been terrible! 

How can that happen....what changes in the body to make you feel so ill again. The good days I didn't over do things. Is it because the ANS decides to just start dysfuntioning again. I just feel like I can't even stand today. 

Pots is so debilitating I still can't get my head round it all. 

21 hours ago, Pistol said:

@Nin - I have HPOTS and tried Midodrine ( amongst other POTS meds ) and it did not affect me negatively - it just did not help in my case

So, in other words - no, I do not agree. Treatment in POTS is highly individual, a lot of Hit-and-Miss. This is even documented in many, many articles dealing with the frustrations of POTS treatment. As with ALL illnesses - physicians need to treat the PERSON and the SYMPTOMS, not the name of the disease!!!!!

Yes I agree with you there, you need to treat the person and the symptoms. I was kinda panicking because I thought with hyper pots it's vasodilation you need to combat and midodrine helps with vasconstriction. I'll try it at least as it's worth a try. How do you get tested for hyper pots? What type of doctor does this?

Just wondering how midodrine works for anyone who has hyper pots? I'm a bit worried about what Medication I will be on as I'm sure I have hyper pots. I will be on ivabradine, midodrine and mestinon. I was told even thou they have sub types of pots it's all treated the same really. 

14 hours ago, Pistol said:

Most of the time I don't know the trigger that set off my symptoms. Has it been hot, humid or changing weather? These all can be triggers for me. Heat and sudden changes in barometric pressure mess with my ANS. So do allergies - it is allergy time here now and I have to take Claritin or I get very bad. Insect bites will do the same. Hormonal changes, such as menstuation, can also cause it. Pay close attention to what is going on the days when you are bad - that way I was able to come up with triggers and can try to avoid them. In cases that are beyond my control, such a weather changes, I simply hang low and wait them out. 

The weather is pretty mild here at the moment so not too hot. I think I need a diary and at least I can go back over the days these siezures happened and compare. It's unfortunate here in the UK don't offer IV fluids. Thanks for your reply 😊

1 hour ago, Pistol said:

@Nin - as far as I know compression stockings are good for hyperPOTS as well. They will make it easier for the heart to pump the blood, so they can prevent ANS dysfuction ( which is a faulty way for the ANS to compensate for the inability to create adequate pressure in the vessels ). Unless you have issues with circulation in your feet I think you should try them if your doctor agrees. they are commonly used for treatment in POTS ( regardless of type ). 

Yeah I thought that was the case that they would be good for all types. I thought I better check in case I was advised not to.  

I've had a terrible day with these siezures. I get a warning one is coming and today it even happened lying down in bed. It has never happened lying down. When I felt something was coming I took my hr/bp and both were sky high (bearing in mind I'm on beta blockers). That's why I wanted to check about the stockings because I know you said about too much vasconstriction with hpots and you need vasodilation, so was worried stockings would cause vasconstriction. 

What would cause too much vasconstriction for me? I was just having a normal day watching TV not stressed. I was eating peanuts (which I'm not allergic) I started to feel nauseous and it all just tumbled from there. Was really lazy with the drinking water today, I drank 2 pints less than I normally would.

I've been advised to wear compression stockings but wondering if it is ok to wear if you have Hypet pots? Don't hyper type pots cause too much constriction in the blood vessels and do these stockings constrict the blood vessels?? I'm not really sure what these stockings do and if they can help with hyper pots. 

Any advice would be appreciated

It's stands for functional neurological disorder. You get neurological problems but structurally your brain looks ok.

Before I was diagnosed with pots the neurologist said I might have fnd. I haven't seen her since to say I've been diagnosed with pots. Is it common to have both? I get a lot of twitching, tremors in my left leg/arm and especially siezures upon walkkng. I have heard people say they get this with pots. Makes you wonder how many people with pots get misdiagnosed with fnd. My brain in frazzled now because I'm thinking could it be both. I'm still getting siezures everytime I go for a walk even thou I'm on beta blockers, I am upping the dose so I'll see if that helps. If this don't work I'm going to find another doc as my current one is not being very helpful

How do compression socks help? Do they help blood flow? Where is the best place to buy these?

13 hours ago, Pistol said:

This sounds like Livedo Reticularis, or spasms of blood vessels. This is quite common in POTS - I have it too. 

 

MOST people with POTS need to avoid vasodilators, except for HPOTS patients. They can actually improve on them. Remember - there are different types of POTS and they all have different causes and therefore may require different meds. This is the reason treatment for POTS is so challenging and very individually.  Here is an interpretation from my article about blood vessels that may explain it better to you: 

( Quote:

Vasodilation

Widening of blood vessels increases blood flow, lowers blood pressure, and occurs when the smooth muscle cells within the walls relax. This can occur in response to endogenous factors such as hormones, chemicals, or nerve impulses. An increase in carbon dioxide, potassium ions, hydrogen ions, and adenosine can all lead to vasodilation. Another cause is the release of the hormone epinephrine caused by the activation of beta-2 receptors in the muscles of the blood vessels. Other causes for vasodilation are the release of nitrous oxide ( a substance released by certain nerves during inflammation ) as well as the release of histamine.  (1,2)

Exogenous factors that can cause vasodilation are heat, certain foods, or beverages (e.g. alcohol ) or light and noises from the environment. Pharmaceuticals can also cause vasodilation and can be used to treat certain conditions like angina or hypertension.  Vasodilation can lead to hot, flushed skin by drawing circulation to the periphery and away from the core. Other symptoms include sweating, tachycardia, nausea, dizziness, vision and hearing changes, headaches, and more. (1,2) 

End Quote )

In many cases pooling of blood in the lower limbs is the culprit, which is a common cause of orthostatic intolerance ( difficulty being upright ) in POTS. Causes for this are varying. That is the reason why a specialist in autonomic conditions is so improtant - they understand this and know how to determine what type of POTS you have. Not every Neurologist or Cardiologist has the expertise to know this. 

Common state of mind for people with POTS - less blood circulating to the brain can cause brain fog. As you see - we all share many symptoms. This was always a comfort to me - to know that I am not a special case or that my condition is rare, but that many others with this disorder experience the same thing AND HAVE FOUND WAYS TO IMPROVE. Just keep looking for answers by finding competent doctors. 

Probably would help if I knew which type of pots I have. When I asked the doctor he said just the normal type. I'm definitely going to make an appointment with Dr Gupta, I suppose I'll have to wait for everything to go back to normal.

Thanks again for your good advice!

10 hours ago, Pistol said:

@Nin - hot and red rather signals WIDENING of the vessels, cold and white or blue would be more like vasoconstriction. Pooling of blood in the legs can cause this. Sometimes vasoconstriction can trigger a sudden release of the tightness in the vessels and result in this symptom. 

As to what medicine can help with this - that can only be determined by a physician. Everyone of us is different in both cause as well as treatment of our symptoms. Most POTS patients need to avoid vasodilators - except for certain HPOTS cases that have problems with vasoconstriction from excess norepinephrine, so it is really important that the exact cause of the seizures and other symptoms gets discovered. 

Yes - I used to. In the beginning of my illness I would walk down a hallway at work ( hospital ) and all of a sudden I had to hold on to the railing because it felt like a trap door opened up under me and I felt as if I was falling. Sometimes I still will suddenly loose my balance, lean to the left and even fall into walls or objects. I am not sure what causes this but I think it has to do with a sudden drop in BP, since it often happens after standing up. In my case I suffer from both high and low BP.  I also experience problems with my eyes as you describe. I sometimes have difficulty focusing or my vision becomes blurry. Have you ever had a thorough neurological work-up? Despite a dysautonomia diagnosis they should rule out other conditions that can have the same symptoms. 

I hope you will get to consult with Dr Gupta and I hope the wait will not be too long!!! 🙃

 

when I look at my legs when they feel funny I have like this blue/purple web type appearance on my legs, my feet feel freezing but my legs feel hot. So I'm really not sure which one is actually happening, vasconstriction or widening. 

I've seen a neurologist but didn't mention my eyes. My balance I did. I've had problems with my both ears which resulted in surgery near brain and wasn't right since. Neurologist knows all this, did examination but offered no further testing. She knows I struggle upon standing and just said at the time about tilt table test. I don't know what's pots and what's been caused from the trauma anymore. Because pots got so many symptoms it's hard to know

When you said people with pots need to avoid vasodilation....what things will cause this? So when we stand up naturally our blood vessels should tighten is that right and in pots they don't? Sorry I just can't get my head round it all still. My brain just don't seem to work anymore 😔 I feel like I can't absorb information like I should. 

12 hours ago, Pistol said:

@Nin - I too experience seizures from POTS and during the years of experimenting with meds I have found that not one med alone has helped me but rather a combination of meds. Every time I was placed on a new med I was expecting everything to just stop - but of course it did not. Only by experimenting with different drugs did I find improvement. At first we had to find the right Betablocker to control my HR and palpitations, then a calcium channel blocker to counteract the vasoconstriction causing the seizures ( by cutting off the circulation to the brain ) and then another one to lower the BP; SSRI to help normalize the neurotransmitters …  And of course once the worst symptoms were under control there were still meds to be added to help with fatigue, brain fog, GI symptoms etc etc … I would not expect more than control of HR and BP from simply taking a BB. Many inexperienced physicians seem to think that if your HR and BP return to normal ranges than your symptoms will too. Unfortunately that is wishful thinking and not reality. 

I have heard a lot of good things about Dr Gupta from patients on this forum that have seen him. As options for autonomic specialists seem limited in the US it may be a good idea to check him out!!!! Good luck! 

P.S. If you look up   pots videos Dr Gupta UK   you will find a lot of helpful videos he made especially for POTS patients. 

 

Yes you're are right beta blockers alone is not going to fix this. The specialist I seen seemed adamant that I'll be on my way with beta blockers and then I lost hope again when I felt no change. I will email him and say this is not working and if I feel he can't help I will see Dr Gupta. I have watched his video's on YouTube and he does seem very knowledgeable. He seems like a real nice guy. 

When I get these siezures coming on or when I can't even speak my legs are really hot, heavy and start to shake. I think to myself surely this is to do with vasconstriction as it feels like my blood is just not flowing. What medication should they give me for that? I'm pretty confident if they can give me medicine to help vasconstriction it's going to help a lot. 

Did you or do you have any problems with being off balance? I'm off balance everyday like on a boat. My eyes are really bad too, I struggle looking at my phone and anything I need them to focus on make me so much more off balance. 

Just wondering if anyone has ever had any help from Dr Gupta in the UK for pots? What was your experience?

I'm currently on bisoprolol and I just don't feel any different. It's brought my heart rate down and blood pressure ok but still struggling to stand for long and still getting all my symptoms. My main one is siezures when on my feet too long or from walking I get them. I was really hoping beta blockers would help but they're not stopping the siezures. Nobody seems to know anything about siezures and pots but hoping Dr Gupta will understand what's going on.