yogini

8 hours ago, Sarah Tee said:

I am struggling to wait out the final 3.5 months to my appt with a dysautonomia specialist (cardiologist), but I feel my health is deteriorating and I need help now.

I suggested to my doctor (GP/PCP) that I should see a cardiologist locally to provide some support while I wait for my specialist's appt. For example, there is a cardiologist who visits to see patients once a month at the GP surgery.

The GP said that a cardiologist who is not a specialist in POTS/chronic OI would not be able to help me.

I disagree.

Wouldn't any cardiologist be familiar with volume depletion, OI symptoms, etc.? Even if they only know about them in an acute setting, surely they know more than a non-cardiologist.

The GP also said that no-one in the region would know anything about POTS/OI, but I found out that there is a cardiology practice in the nearby large town that has a tilt table and diagnoses fainting and dizziness disorders. Although POTS isn't mentioned, it seems like the cardiologists there would know about it.

https://www.cvcvictoria.com.au/service/tilt-table-testing-ttt

Should I keep pushing?

I am starting to feel like the attitude is "Ignore chronic conditions and let people get worse until they end up in hospital and then maybe someone else can do something".

In three months, maybe I won't be able to get out of bed, or maybe I'll catch a nasty bug because I'm so run down.

Doctors can be hit or miss.  Awareness is improving, but I don't believe most cardiologists know how to treat POTS.  Getting to the wrong doctor can actually set you back.  If there is another doctor in your area on the Dinet list with a shorter wait, that might be worth a try.  3.5 months seems like an eternity but it is not unusual to wait that long to see a POTS specialist.  You can also keep calling for cancellations.  I am not a doctor, but most people do not get that much worse over a short period of time (unless something external happens like a car accident).  

On 4/24/2021 at 3:04 PM, NReed2000 said:

Hi, I found this board when doing research for my husband. He has not been formally diagnosed, but has had symptoms of Dysautonomia for years on and off. He had been doing really well until he got the #1 Pfizer 2 weeks ago. Since then symptoms have been severe. He started on Thermotabs today, hoping this helps. He feels like DRs have not believed him in the past and doesn’t know where to turn ?  He is also a Type 1 Diabetic. 

Dinet has a doctors list on the website.  If you can connect with a  good doctor experienced in treating POTS patients, he will find improvement.  Good luck!

On 2/17/2021 at 8:37 AM, Sarah Tee said:

I have been trying to eat a low-carbohydrate breakfast (or mini-breakfasts spread out as snacks) because my symptoms seem to start after eating in the morning.

But I'm struggling as to what to eat because I have a some restrictions.

First, I feel pretty blah in the morning, so I need something unchallenging. Second, I can't eat egg in any quantity. Third, I can only eat medium or low fibre foods. (This is all because of some bowel surgery that has gone astray, not dysautonomia.)

Fourth, I'm vegetarian (but even if I wasn't, I don't think I could face meaty or fishy things for breakfast).

 

What do you eat for breakfast and snacks if you have to watch your diet for dysautonomia reasons?

My best effort so far was grilled tomatoes with cheese on top. It was a little hard to face but I think it might have helped.

Honestly any food is fine to eat for breakfast.  Many dysautonomia patients find it easier to eat less earlier in the day.  Food is ofn easier to digest later in the day

On 3/21/2021 at 4:18 PM, Abe said:

Anyone experienced this severe a vision issue?  My eyes feel so heavy, painful and blurry.  It feels like they are going to fall out of the socket or go blind.  I work with computers so maybe it has to do with that but my glasses have blue light protection. I'm freaking out badly now because I don't know what I would do with my life if I go blind.  My body tension have been so bad lately to the point that its causing me some neurological symptoms.  Muscle tensions all over my head.  I can't imagine life being like this for the rest of my life.  I don't know what's causing all these.  Not sure if its POTS, anxiety or depression.  Just tired.

Eye pain can also be a migraine.  I would definitely go to a doctor and get this checked out.  It could be dysautonomia related or not.  I would not assume it necessarily has to do with your eyes or will end in blindness.  Sometimes chiropractors can be helpful and sometimes they can make things worse, so that is also something to consider.

41 minutes ago, Nin said:

Anyone find abdominal compression binders any good? I wear knee high stockings at the moment and can't be without them. I just thinking ahead to the summer so I can wear a dress. I personally can't see how it would help as the blood pools to the lower body 😕 

Gravity pulls the blood downward.  It collects below the heart, including in the abdomen for many people.  This is especially the case after you eat.  I personally can't tolerate abdominal compression, but it helps many people.

Hi The heart is the muscle which palpitates.  You would only feel that in the area around your heart. In other places in the body, it's just a blood vessel pulsating.  If you feel it in your neck be sure and tell your doctor, as they may want to do an exam of your carotid artery.

On 4/15/2021 at 5:35 AM, Pistol said:

@Soph1802 - your doc is right, POTS is diagnosed by an increase in HR sustained WITHOUT a significant drop in BP. However - I have both HPOTS and NCS ( neuro-cardiogenic syncope ), the latter causing syncope by suddenly dropping both HR and BP.  In normal people the HR and BP adjust upon standing within one minute and normally do not cause symptoms except for the occasional dizzy spell upon standing up too fast. Either way - you definitely suffer from dysautonomia and treatment for POTS and NCS are similar. Most common treatments for POTS with pooling and LOW BP are beta blockers, Midodrine or Florinef, SSRI/SNRI ... there are more but these are the ones most commonly mentioned. Has your doc prescribed any of these meds? Florinef and Midodrine especially work for people with drops in BP, so they might very well help you with some of your symptoms. For blood pooling compression hose of 30-40 pressure is recommended and can help greatly for the pooling and BP drops, as well do salt and fluid loading. 

You might find this article helpful:  https://www.dinet.org/info/ncs/neurocardiogenic-syncope-info-r10

Don't worry - I used to faint all of the time from NCS, and took seizures from HPOTS. Today these episodes are rare for me, thank god. There is a lot of reason to be hopeful!!!!!

My understanding is POTS is a sustained increase in HR, whether or not your BP changes.  It's quite common for those of us with POTS to have a decrease in BP after standing.   In other words, many of us are also orthostatic, diagnosed with both POTS and OH or NMH.  I have both diagnoses. On some days my HR can be normal and my BP low.  But most of the time I have higher than avg HR and low to normal BP.  

There are different views on whether the actual classification matters much, as there is a large overlap in treatments.  Some doctors refuse to sat POTS or OH and give a general diagnosis of dysautonomia.  Others don't prescribe beta blockers for OH, but honestly I took (and needed) beta blockers for years, combined with medications that stabilized my BP.  That is a pretty standard combo but it's just a matter of trial and error and what works for your body.

Everyone has a different mechanism for dysautonomia but in my case I am fairly certain my BP drops due to pooling when I stand.  In order to maintain BP my  then HR increases.   Of course there are also some versions of POTS with high BP, so it is all very confusing! 

At night we don't drink fluids.   I think that has a lot to do with it.  It takes several hours after we wake up to make up for that.

On 4/6/2021 at 6:37 AM, CallieAndToby22 said:

I'm so sorry, I definitely can't tell you what sleep is, I think I remember but I'm not sure!!?? 

Thanks. Yea this was pre dysautonomia diagnosis but it lead me to seeing cardiologists. The beta blocker has helped with this but like you said, I need a lot more help which I'm working on attaining, and I think the proper help will lead to sleep. I wish my bladder would disappear though, the constant pain and feelings of urgency are very disruptive. 

 

Trazodone is a good medication for sleep, I take some at night. 

You may want to discuss with your doctor the time of day you take the beta blocker. For example if you take in am, maybe take it at night (your HR will be lower)  or if you take at night maybe it's lowering your BP too much - switch to day. 

20 hours ago, Positivelyjenny said:

Just wondering on average how many hours of sleep you all get a night?

It varies depending on so many things.  Some nights I sleep 4 hours, other nights 10.  It is  also not unusual for me to wake up in the middle of the night.

On 3/31/2021 at 10:44 PM, MomtoGiuliana said:

Interesting about caffeine reducing cerebral blood flow--maybe not everyone with POTS is affected that way.  But I believe that I am and this is the first I have heard this.  I actually get increased orthostatic symptoms after drinking anything w caffeine or eating chocolate.  It never occurred to me this was something documented in other people!

Caffeine is a stimulant which increase the heartrate,  That is also one of the reasons why some us have trouble tolerating it.  It definitely increases my HR but I feel much more alert, awake and I suspect it helps keep up my BP so it's worth it for me.

Hi  I would try doing some different experiments.  For example if you were drinking tap water, try bottled water.  Maybe there is something in your water that you are allergic to. A doctor can confirm but I think it is unlikely that drinking water alone would cause headaches.  If you took in too much salt and your blood pressure becomes too high, that definitely causes headaches.  The way to manage this is to buy a home BP monitor and very gradually increase your intake of salt and or water.  For each day measure your HR and BP a few times and also write down how much salt and water you have. When your BP starts to get too high you reduce the salt, instead of allowing it to creep up.  Water washes out the salt, so it is always important to drink water even when your BP is too high.  I also adjust for my menstrual cycle etc since I retain more fluids around that time.   

Perhaps a doctor could work with you to figure out why your heart rate is so high. 90-120 lying down seems quite high.  I have had this very rarely but can’t imagine every day..If you are diagnosed with dysautonomia I am not sure adrenaline is the cause of it.  For example if your blood pressure is low your heart might be beating faster to try and maintain it. I suspect you will sleep much better when that is sorted out.

I got my first vaccine dose almost 2 weeks ago (Moderna).  I definitely didn't feel well for a full 24 hours after getting the shot.  I got a weird taste in my mouth immediately and then a few hours after, I started to feel strange.  No fever or tachycardia, but I didn't sleep all night.  I was lethargic, had a mild headache and sore back/neck and complete brain fog. It really felt like it triggered an episode of POTS minus the fast heart rate, if that makes sense.  It wasn't unbearable, but I was completely out of it. Then suddenly all the symptoms went away.  So overall, it wasn't that bad.  It will be interesting to see what happens with the second dose.  

1 hour ago, CallieAndToby22 said:

Decaf still has caffeine right? I was discussing this in another thread but caffeine cuts off 30% of cerebral blood flow so it could cause the lightheadedness you describe. 

Do you have salt tablets? I dissolve them in water then drink it quite diluted and it's the only way I can retain fluid. I don't drink what they recommend my bladder problems are horrific and I can't spend all day in the bathroom so it's kind of just do your best. A lot of people drink electrolyte drinks, there are all kinds my bladder just can't handle the citric acid or potassium so I go with the dissolvable salt tablets. 

Decaf has trace amounts of caffeine.  Caffeine increases blood pressure and HR.  I'm not that caffeine's impact on cerebral blood flow rules it out for dysautonomia.  Some people need it and can't function without it.  Others can't tolerate it.  I've always heard that those who can't tolerate expereinced an increased HR.  I never heard the cerebral blood flow discussion before.

 Salt only works to increase your BP if you chase it with water.   If you are not taking  the recommended amount of water with your salt, you will be less likely to see the benefits of the salt. 

7 hours ago, peachychou123 said:

Couple days ago I was on my phone in bed for a while. I try to avoid this because I know it gives me tingly uncomfortable arms due to lack of blood flow. It’s usually mild enough that I can ignore it.

Well this time when I put my phone down I had extreme pain and numbness in my arms and hands. It lasted hours and I could not get relief from it. It was quite agonising. Because I was having some preexisting chest pains I got very scared and went to the ER. Because my last trip wasn’t too long ago a senior doctor saw me. He was kind of mad to be honest. Of course he had never heard of POTS and didn’t really care to hear about it. Basically he did an EKG and said you’re good - refused to do any blood draws because I had some not very long ago. I was upset by this and insisted this symptom was new but he wouldn’t budge and told me to go back home and rest.

Well ever since then my arms and hands have been quite painful and tingly on and off. I have no idea what’s causing this. It was the kind of ache and pain when you have a virus but I don’t have any other symptoms of one. 

My mind always panics whenever chest and arm pain are involved. I have regular chest pain but never arm pain like that. Now it seems like anytime I raise my arms above my head for more than 30 seconds they go tingly and numb. Trying to breathe right so as to avoid hyperventilating which makes it worse. I keep worrying my heart isn’t pumping correctly even though my pulse is strong and capillary refill time is okay. Anytime I get a new symptom I freak out. Anyone else experience this arm pain and numbness?

If you get a regular heart work up your doctor should be able to tell you whether you are at risk for a heart attack, and the criteria you should use to go to the hospital  Although dysautonomia can feel scary it isn't typically connected to a heart attack.  For most of us, our doctors have advised us that we don't need to go to the ER unless we faint, etc.

On 3/23/2021 at 11:25 AM, Julyrose said:

Yogini: good point. But yes, my cardiologist has many POTS patients and I feel confident in his assessment . My tachycardia is entirely positional, resolving fully when I lay down. But of course, things can change, so good to be aware of any changes in pattern and bring them to your doctors.

I am not sure that positional tachycardia is necssarily limited sinus tachycardia.  If you are under the care of a good doctor that treats a lot of dysautonomia, then you are probably already getting the best advice!

It may not make sense to try to remain standing when you experience this.  Dysautonomia involves sinus tachycardia.  Hopefully your doctor is in the loop and has ruled out other forms of tachycardia like SVT. 

Hi, I think it might make sense to mention this to your doctor.  Others on this forum might have had this symptom but it could also be caused by something totally not related to dysautonomia.

Look up coat hanger pain.  It’s quite common in dysautonomia.

On 3/13/2021 at 7:20 AM, Jyoti said:

Thanks all for sharing your observations on this subject.   It was affirming in that weird way we all recognize to know that something seen as universally good can be otherwise in our experience.  Arm movements, arms over the head--yes @Pistol,  @Sushi--these are definitely not good for me.  And you are right @RichGotsPots, it can be done lying down.  I think it can even be done mentally alone.  If one wishes to.  

I think I was just feeling crazy--why would three days of 20 minute gentle and loving movement cause me to be considering the ER?  So...thank you!

Honestly I’m not a doctor but it seems unlikely that three days of doing this would send you to the ER, unless something else was already going on in your body.  If y are already in a flare, then yes, anything can cause it to become much worse. Exercise and wellness activities are all about what works for your particular body and mind.  There is no particular activity that’s benificent for all people. Personally floor yoga exercises worked very well for me, and I started with only 5 minutes.  Starting small doesn’t hurt and if your symptoms aren’t triggered you can quickly build up. 

On 3/11/2021 at 3:39 PM, TorturedSoul said:

Thank you everyone. Honestly, anything that makes my stomach constrict makes me feel sick. I remember going to a wedding a few years ago. I had sudden stomach pain. A burning feeling that just progressively got worse. I started feeling very ill and so weak. I laid on the floor. I was taken to the ER, but they were so busy it was hours before anyone could see me. I used the bathroom finally and felt a little better so I went home. I often wonder if it was some sort of ischemia or something caused by the stockings I was wearing. I also had a weird episode when I suddenly bent down to put something in my bottom kitchen cabinet (vomiting and nausea). So who knows anymore. Thank you everyone for your responses 

Same here, I can’t wear abdominal binders and get uncomfortable even with panty hose.  Pooling isn’t bleeding. It’s blood collecting in the blood vessels in  parts of your body below your heart.  You can lie down to make it go away, so that your whole body is level with your heart.  Increasing your blood volume by drinking lots of salt and water tends to help with pooling.

You could check on dysautonomia websites but it’s unlikely there is a lot of research at this stage on dysautonomia and COVID vaccine.  It is a judgement call.  The vaccine makes it unlikely that you will wind up in the hospital or on a ventilator with COVID or that you will get severe COVID symptoms.  To me any temporary vaccine symptoms however harsh would be worth it fir peace of mind, especially because full blown COVID on top of POTS would be really bad.  Even just the worry of going outside or running to the store and possibly contracting Covid causes so much stress, washing hands, social distancing, the inability to see friends and family.  The mental relief will be worth tolerating any vaccine symptoms for me. 

Have you tried compression garments or even Spanx?  This forum us a helpful place to vent and discuss your symptoms.  Normal people will not understand.  I don’t even bother anymore. 

14 hours ago, CaveGirl said:

Yes, but when you lay down the lowest point is not the feet. Maybe too little blood flow causes a massive pressure in the head, eyes, ears. Not sure. I however get the same symptoms when doing a handstand against the wall, including shortness of breath and a heart rate that doesn't go up. Getting my heart beat faster fixes the problem. But it doesn't explain why this goes away as soon as I sit up. I woke up over the past few weeks with either a pressure buildup in my legs, in my belly or my head. My heart seems to be healthy. The only thing found during a 48h holter test is that my heart randomly speeds up to 100bpm for 20 seconds or so while I sleep. There were nights where unfortunately nothing else happened and I just slept all the way through. My heart also occasionally does a little sprint during daytime, very rarely though. I always thought it was kind of fixing blood pooling but not sure.

When you lay down your blood should distribute evenly.  There is no pooling in the head.  You can check your blood pressure as maybe it’s going too high when you lie down