Pistol

Yep - I get it. Left side. pressure-like feeling. Worse with rest, relieved ( sometimes ) with moving around. I was told it is because of circulation abnormaities in dysautonomia patients. Sorry - I don't recall the exact explanation but it is common for POTS patients.

@TheBaxter - if you have blood clots in your urine you need to have that evaluated. Please make your doc aware. If your dad does not understand you could tell him that you need to be checked properly or your trip to England needs to be cancelled. I would tell your GI doc that you do have symptoms of H. Pylori - I had similar symptoms to yours and I tested positive for it. If you have diarrhea with undigested food YOU NEED AN ENDOSCOPY in my opinion!!! If all else fails - do you have insurance once you get to England? They might have better docs there that could treat you once you get there?

Hi - I am sorry you are going through this. First of all - what country are you in? If the docs believe you have dysautonomia then they are wrong to tell you that it cannot be treated. Many of your symptoms should be addressed and can be treated to some degree. If the Concor helps for the HR then that is a good thing. The GI specialist should order a scoping and tke biopsies as well as check for H. Pylori ( a bacterial infection of the stomach that can cause all of your GI symptoms ). At least here in the US that is standard for your symptoms. Also - if that is negative and your symptoms continue they should probably do CT etc. The weightloss and your symptoms are concerning enough that they should not be dismissed. The antidepressants could help for the brainfog and also many autonomic issues - is it an SSRI? But they usually are not the best med for autonomic disorders - they are just ONE treatment option. How are they treating you Fibromyalgia? -- You may want to check the physician list on this web site since there are many specialists listed for dysautonomia. Since several of your docs mentioned it you should have no trouble being referred to someone. ( Normally if a physician does not know how to treat something he should automatically refer you to someone who does know - not just dismiss it as dysautonomia and give you a pill and send you away ). Please look for a doctor that is familiar with dysautonomia, even if you have to tavel and even if you have a long waiting period. In the mean time drink lots of fluids, check with your cardiologist if it is save to increase salt ( this helps most dysautonomics but can increase your BP ), you could try compression stockings. I am not sure what foods you tolerate but in general it is recommended to treat weight loss with frequent small meals that are high in protein and nutrients. Loss of appetite could be treated with medications but you have to ask your doc to prescribe one. --- Do you still have strong headaches? Have done MRI or CT? --- Please do not give up - many of us on this forum have went through exactly your situation before. The very most important thing is to get yourself a good specialist. They are out there!!! Let me know if I can help in any way.

@Delta - you will know when you have a surge. Your heart starts thumping in your chest, you get cold and clammy, hands/feet/nose all get ice-cold, you start to shake uncontrollably, your chest hurts, you can't breathe, you get super-excited … many people think this is an anxiety attack but actually the physical symptoms start first and the anxiety follows.

@Scout what you describe is called neuro-cardiogenic syncope and it is caused by dysautonomia. But it is different than POTS syncope. Only 30% of POTS patients actually faint. So you would have both - POTS and NCS. I have hyper-adrenergic POTS and I do faint but it"s a different mechanism than NCS. When I have a flare or a triggered event I faint and take seizures due to excessive vasoconstriction ( seizures ) or vasodilation ( syncope ). The triggers are the usual POTS triggers. You could show me the goriest scene and I would not faint, not even when I hurt myself. But if I stand too long ( my limit is 45 seconds ) or get too hot etc …. thump, there I go. With NCS you have to make sure you are aware of the possibility of fainting, identify your triggers ( blood and pain are common ones ) and then sit down and prepare for the inevitable when needed. I know - that sounds dumb but with syncope the most important thing is to avoid injuries from falls.

I feel worse standing than walking, if I stand and get symptoms I have to walk or I pass out. If I walk too much though - I pass out too. But @jim28 - in your case I would totally consult your cardiologist. And about ablation: it will not help POTS and may even make it worse, but in your case you have SVT, which changes things. Ablation is what many cardiologists recommend for SVT, so - again: these questions should be answered by your cardiologist.

@Jessica_Be careful with Reglan since it can cause irreversible side-effects. I took it for a while when I was extremely ill with GI problems but my PCP warned me to only take it for 2 weeks tops. I also took Compazine, Phenergan and Zofran. Now Zofran is all I take as needed for nausea. It sounds like you may have issues with gas since you mention burping a lot. It might be helpful to stop dairy and gassy foods?

Hi - I am so sorry you have to go through this. It makes me sooo mad that there still is so much misunderstanding of dysautonomia out there!! If a cardiologist says a TTT is negative because you did not pass out then the cardiologist needs to take a seminar on how to interpret TTT's. If you are symptomatic and your BP changes or your HR increases and stays up ( you did not mention what your HR did ) then you have a positive TTT. It is wrong to only look for syncope. I had 2 TTT's, one I had syncope after Nitroglycerin and one I had tachycardia. The second one was positive for POTS based on the HR increase ( this is per my specialist ) but the cardio that did the test said it was negative because I did not pass out. And he was a EP! --- I saw 5 cardiologists and 1 neurologist but did not get diagnosed until I saw my autonomic specialist ( 7 hours away ). I would really request a doc with knowledge of POTS, you can call major hospitals in your area and ask who treats dysautonomia before making an appt. If the docs say they treat it then at least they acknowledge it's existence!!! --- Cudos to not taking meds just because someone tells you to. Beta blockers probably could be a start and they do prescribe them for IST but it sounds like you do not have that if your HR goes down with laying down. --- Have you checked the physician list on this forum?? Best of luck - do not give up - eventually you will find help!!!

@Shane - not at all a dumb question. What we refer to as a "surge" is an episode of sudden and extreme nor-epinephrine output, you could call it an adrenalin- rush. It is caused by anything that stimulates the ANS: standing, walking, stress, noises, heat, cold … the causes are multiple. The reaction is always the same: the sympathetic NS over-reacts and it is almost like going into shock. This is a part of autonomic dysfunction - in "normal" people the sudden rush of norepinephrine is balanced by the parasympathetic counter-reaction. In ANS dysfunction this balance does not exist. So whenever someone mentions a "surge" it is usually describing this mechanism.

I agree with @StayAtHomeMom - both BP and HR normal depend on what YOU normally run. I used to be 90's/50"s before I got POTS and felt like a million bucks. So - 110/70 may be normal for you. Also - as stayathomemom said - if your baseline HR is 60 and it goes to 90 or above and stays there for 10 minutes OR you have a HR above 120 for 10 minutes AND you have symptoms that is considered POTS. So - again - it depends on your baseline HR.

@Scout - the shaking and shivering and even teeth-chattering is all normal for hyperadrenergic surges. The best thing you can do is retreat - sit or lay down in a quiet and dark room ( when not in the house I use public bathrooms ) and wait it out. This helps the ANS to calm down because you do not stimulate it any longer with external causes. And then you should be in bed afterwards. I know - this sounds impossible but it is what it is - POTS IS IMPOSSIBLE!!! I personally do not get these flares often anymore because I am housebound and can rest when I feel the first sign. When I get really bad I even take seizures from the surges. Certain meds can also help to decrease them. Do you see a specialist?

@Roxy - it sounds strange but -I am happy for you!! I too am disabled due to POTS. For me it took 2 years and I had a hearing with a administrative law judge. When he heard the gory details of my story he gave it to me on the spot. Yes - it is hard to be "useless" as I call it, but it's OK. I went through some depression when I first had to stop working but now I am over that. I am thankful that I can now somewhat control my symptoms because I no longer have to push myself and also I can take care of some basic things for my family ( on good days ). Be well!!!

@Jessica_ nausea can be a part of dysautonomia. I get waves of really bad nausea and at times these waves last hours or all day. I take meds for these. But if the nausea continues for you you should really see a doctor, not only for meds but also possibly for a scoping.

@Shane - To me eveything you describe sounds like OH. TTT's are not the golden standard ( as per my autonomic specialist ) and there are many false-negatives (less often false-positives but they happen too). Do you have a way to measure your BP at home? It probably would be best if you take your BP during these episodes and keep a record of your readings as well as your symptoms. That way you can present them to your doc.

M surges are a lot better due to my meds and the fact that I no longer work and this anables me to pay attention to my symptoms and stop to rest as soon as I feel asurge coming on. Of course that means that I rarely leave the house because when out I cannot just retreat when a surge is coming on. But -y.es in my case I am able to minimize the flares ( but they are still waiting to happen every day ).

@zerohours000 and @Shannoncr I too had trouble sleeping when my symptoms started for many years I would fall asleep fast but wake up after 3 hours wide awake right around the time most people sleep deepest because their adrenalin levels drop and they go into REM. The poor sleep made my hyperadrenergic symptoms so much worse - it was like an evil domino-effect. But after becoming disabled ( which enables me to pay close attention to my body and rest BEFORE I get too excited over overstimulated therefore bringing my norepinehrine levels down) and taking many meds spcific for hypradrenergic POTS I sleep really well most of the time. What helped me mostly was Lexapro and Ritalin ( in addition to other meds ) and if needed I take Ativan 0.5 mg before bedtime. I also take 1/2 of Flexeril at times for muscle spasms and that helps too but mostly I sleep without meds as long as i do not overdue any activities during the day. For me it seems that as long as I keep the adrenalin surges away I do not get them at night either.

@plaster89 - I went to an ENT/Allergist she did labs and urine tests.

@Scout I am sorry about your troubles. Let me first tell you that your sudden surges, high BP and the fact that they appear suddenly sounds exactly like my symptoms, I have hyperadrenergic POTS. You will not be able to control these on your own, all I can recommend is to rest. With me any stress, overstimulation, walking/standing tec set off the surges. When I used to get them at work I had to sit in a dark room with my feet elevated until they were over. --- I truly believe that you NEED to see a specialist in ANS disorders. Not only for diagnosis but also for treatment since it is very tricky to find the right med combination. I had to go out-of-state and am glad I did because my specialist was a life-saver!!! But these centers usually have long waiting lists. In the meantime maybe an endocrinologist would be helpful since he would be able to order tests to check neurotransmitters. They are elevated in hyper-POTS and are the test they use to diagnose hyperadrenergic POTS. You can also ask at major hospitals in your area for physicians that treat autonomic disorders. -- About betablockers: I had to try several until I found the one that helped me. But I take now about 11 meds for my POTS-related symptoms. There is no ONE med that will make things better overnight. Having said that - please do not be scared by this. Finding an experienced physician is essential and will give you great relief because he will be familiar with ALL of your symptoms. Best of luck!!!!

@Bluebonnet08 thank you soo much for sharing this!! I used to get NSS infusions but when there was a shortage of NSS due to the hurricane in PR they gave me LR. I really did so much better on it, so now they give me LR when I get bad. I do not tolerate fluids given fast, so they give me 4L LR over 24 hours and it totally turns me around, it is like a button gets turned off. I hope you continue to feel better and I wish you well!!

I was told this could be a sign of mast cell activation syndrome

@Always hoping - I am wondering if there is a GI issue causing the high BP, not the other way around. When "normal" people have pain their BP goes up. It would be that much more in dysautonomia patients. I know that whenever I have something wrong with me I get the high BP before I even have the symptoms of what is wrong ( like colds or other illnesses ). Is the pain in your upper abdomen or lower? Could it be gall bladder? Or an ulcer? Or even a kidney stone? Diverticulitis? Any of these conditions could cause episodic pain that could set off your BP because of the pain. --- I haope the scoping will show something and you will soon feel better. Best wishes!!!

@CK1 - yes, I am disabled due to POTS. I have been symptomatic for 8 years and disabled for 4. And - I take guanfacine!! It really helped me - but it is only one med I take for POTS. In my case I have the most disabling symptoms due to vasoconstriction but also GI, brainfog, fatigue ( when I am not hyper ) and many more.

@CK1 I have dysautonomia with adrenergic storms, they diagnosed me with hyperadrenergic POTS. Have they checked your norepinephrine and dopamine levels? And … oh, do I hate those storms! Shaking, clammy skin, heart beating out of the chest, cold feet and hands, roaring in the ears … terrible! I rarely have them now since I am disabled and on tons of meds. When I do get them it is because I stood just a second too long, so I rest a lot between chores.

@jklass44 you are absolutely right. And I also believe that POTS is really not a good name because it is ONE symptom but by far not the worsed one. I guess they get so hung up on it because it is one they can detect with a test, so if your heart does as they want it to then you have it. If not - I guess it's all in your head.

I am wondering how many of you benefit from Lactated Ringers more than Saline infusions? My autonomic specialist claims that there is not enough data to tell if anything other than NSS ( Saline solution ) helps POTS patients. However - I have found to be A LOT BETTER for longer times after LR infusions rather than NSS. With NSS I would get headaches, fluid retention and high BP. Oddly enough - when I need fluids my BP is HIGH and when I get LR my BP goes down. And CP, palpitations and headaches go away. With NSS I do not have that immediate relief of symptoms. AND - when I get bad I start peeing very much but when I get LR I do not pee all the IV fluids out right away. @Bluebonnet08 - you mentioned in one of you posts that you also benefit from LR. Any Input? ( Hope you continue to be better? )