Help!

[TheBaxter]

Hello everybody!
I am new here and am searching for support as I strongly need it right now. I am 22 and I was assigned with fibromyalgia two years ago and was prescribed antidepressants for it so it kind of been away until recently. About two months ago suddenly I had strong headaches accompanied by constant gas, bloating, nausea, complete loss of appetite. So I went to a gastroenterologist and the doctor told me it's just IBS. After a week I had a resting heart rate of 140 with elevated blood pressure 130/80. So this time I went to a cardiologist and the doctor told me that my heart was healthy and prescribed me Concor to alleviate my heart rate. As I felt also pressure in my head and very foggy mind to a point that I feel constantly as if I am asleep I finally went to a neurologist. The neurologist told me I have dysautonomia and prescribed my again antidepressants. The problem was that they weren't working so she told me to go to a psychiatrist. And as my crazy trip from doctor to doctor, I visited a psychiatrist and we talked and that was it. No medications, no diagnosis, nothing. She only said it might be dysautonomia indeed but she can't help it. I forgot to say it, but before I went to any doctor I done a blood test, a TSH test, checked blood sugar and urine and everything was fine. However, my symptoms didn't stop, no matter the antidepressants I was prescribed by the neurologist. Only my heart rate is better. All that time just from the start of my IBS two months ago to the present moment I've lost 14 kilograms. Because of this drastic weight loss and doctors not taking me seriously I am suffering from a lot of anxiety and depression bouts. Please help me! I am so scared that there might be some hidden cancer or something, but none of the doctors just tell me it's from the dysautonomia and they can't help. I really don't know who to turn to! I am just two months apart from starting university and I really need to sort out this health issue, but can't understand what it is!

[Pistol]

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. 

[TheBaxter]

I live in Bulgaria. Here we have no good specialists for anything. Only option people have is to go to Germany as the closest to be examined. Concor definitely helped me. Other medications I was prescribed are Velaxin 75 and Fluanxol 0.5. I am also taking probiotics and drinking lime balm tea to alleviate my issues with falling and staying asleep. My fibromyalgia is not that bad as it was years ago and it is manageable. I am continuing to lose weight and am very very anxious about it. I have often diarrhea with sort of undigested food. However, I do not have any autoimmune disorder or gluten intolerance. A month ago one morning I have seen some red cloths in my urine, but they never appeared again after that. I am having constant bloating and no appetite at all. I am so depressed that my family is not taking it seriously at all and even as I am financially dependant on them, I asked my mom for money to visit another GI doctor and she told me it is so unnecessary and that it is just because of the summer. When I asked my aunt she told me that how I even dare " such a healthy organism" to go from doctor to doctor, because just of an upset stomach. When I tried to talk to my dad he got very irritated and started shouting at me so he is also not an option. So I am left with no support, no understanding, no doctor who can examine me properly. I am also just two months apart of going to study in England, in Buxton. I can't go there in such physical state. What should I do? Btw I don't have so strong headaches recently. I haven't done any MRI or CT. Doctors just don't want to refer me and tell me everything is all right and I am healthy without examining me at all. Only the cardiologist examined my heart. My GP told me that it cannot be H.Pylori since according to her I don't have the symptoms for it. I am trying to prepare myself for varsity, but my energy is so low that every daily activity is suddenly so hard to do. I really don't know how to help myself and what to do.

[Pistol]

@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?   

[TheBaxter]

I just talked to my mom and she said we are visiting a gastroenterologist this Wednesday. I will post again after the visit. Thank you for the help!

[DizzyGirls]

I hope you see this before you go.  It sounds very much like you have gastroparesis, which is caused by the dysautonomia.  Try to keep your weight up, though.  I've been through this with my daughter who is almost 20.  I have a 22 year old, as well.  Both have dysautonomia and we have had years of experience dealing with gastroparesis and other GI issues.  Both girls have Ehlers Danlos Syndrome.  You might ask the GI about it if no one has ever diagnosed you with it.  Our GI is very knowledgeable, but we are in US, so doesn't sound like you have a lot of options.  One GI doc prescribed Iberogast for her.  It's natural and we got it off of Amazon.  I'll be honest, we haven't tried it, although we have a bottle of it, but I know that it is from Germany.  Thought you might actually have access to that.  Also, are you lactose intolerant?  I would try going off of milk for a week or so and see if your symptoms improve at all. If you go off of milk, you would have to check ingredients in everything you eat, not just milk by itself.  For example, do you McDonald's there?  The french fries are soaked in milk to give them that slightly sweet and salty taste.  Really affects my daughters.  It's things like that.  Read labels!   Do you have access to any nutritional drinks that are lactose free?  If you can tolerate them, I would highly advise trying to drink a little at a time whenever you can.  You shouldn't lose any more weight.  Please update us after your appt!  Best wishes!!!

[TheBaxter]

 

I never tried to go dairy free, but I have tried Iberogast for two weeks just at the beginning of my symptoms. I was also prescribed Amiral, Ormus, and Spasmomen. But it didn't have any effect - the same bloating and so on. I've started a diet because of recent diarrhea ( potatoes, bread, rice and chamomile tea ). However, I will tell the gastroenterologist about gastroparesis. Hopefully, he ever heard about it, or do any examination at all, or again I will be in a search for another doctor. Thank you so much to all of you who are connecting with me! It means so much to me, especially in tough times!

[KiminOrlando]

I agree. Gastroparesis and pernicious anemia should perhaps be investigated. Being overseas they may prescribe Domperidone for the gastroparesis. It helped me tremendously. I hope you can get help. Pernicious anemia needs high dose B12, probably not orally because you are having digestive issues but it can be a side effect of gastroparesis. 

[TheBaxter]

I just phoned a gastroenterologist in my town and I am now in a long waiting line for next month. Other doctors recommend her as the only gastroenterologist that can properly examine in my town, so I should call her this Friday to arrange an appointment for next month. Meanwhile, I read about gastroparesis in my local language and I have just the exact symptoms that you also agreed to. Any tips how can I handle the symptoms before the doctor visit? By the way, I also wanted to ask you if you ever experienced gustatory sweating after eating and tingling on the body without any reason? Is it again dysautonomia related? It's been crazy two months for me with constant appearing symptoms and visiting doctors. Feeling tired from it already, but thanks to all of you my journey feels so less lonely and scary. Thank you in advance!

[TheBaxter]

Hello everyone! I just read about these particular symptoms being also related to MS. I am having very difficult concentrating, doing so many mistakes while I study and feeling dizzy and tired. By the fact that I am only 22 I am more prone to exclude it, but should I do so scan of the brain? I am just very anxious because of my unexplained symptoms. Not wanting to sound hypochondriac either. What is your opinion about it? So sorry for bothering you all and thank you!

[Pistol]

@TheBaxter - the difficulty concentrating, dizziness and fatigue ( tiredness ) are all common symptoms of dysautonomia. In my case I had extensive tests done for it - MRI of the brain, neuro-psychological evaluation and neurologist visits. All showed my symptoms due to dysautonomia. I feel that if you are anxious about these symptoms it would not be a bad idea to ask for a MRI, especially since you are planning to go out of the country soon. But as I said - these symptoms are normal for dysautonomia.  As for the GI issues - there are several members on this forum that have this also and they will hopefully have some tips on what to do until your GI visit. --- This sounds like an overwhelming stressful time for you - be gentle with yourself!!!You can only do so much - studying, doctor visits, all of your symptoms and the uncertainty of what is to come would take a toll on anybody, even healthy people!!! Rest as much as you can, drink plenty of fluids, avoid heat and stay positive!!! In the end it will all work out!!!! 

 

[TheBaxter]

Thank you so much for the support! It is indeed a very stressful bout not only physical symptoms but also a lot of anxiety and depression. I am trying to stay positive though! I also think it is all related to dysautonomia and it is just a flare up, but I will do all other examinations in England. In my country, I will only visit GI next month and still don't believe they will help me anyway. Do you know what can I naturally do to help me, for example, any herbs? I am a very sporty person and have been all my life, I don't smoke, I drink very rarely,  eat a healthy diet. Kinda seem to do it all to help myself, but it still doesn't alleviate dysautonomia. Had anyone experienced that severely dysautonomia too? Thank you so much again!

[Pistol]

@TheBaxter - yes, my dysautonomia is severe and I had to stop working indefinitely to help control the symptoms. But that does not mean that this will happen to you. I was already older ( 42 ) when I became ill. I know from many sources that young people often get it at your age and then improve after a while ( months, years - depends ). -- What you can do to help with the symptoms until you can be regulated at least temporarily with meds is: DRINK FLUIDS and REST!!! It may sound simple to you but this is the only thing that helps for flares. And IV fluids - they stop my ( and many other dysautonomia patients ) flares instantly!!!! I have orders to go to hospital overnight for 24 hours of NSS or LR infusions when I have a bad flare. I come in unable to stand. walk or think and leave the next day hopping and skipping!!!!

[TheBaxter]

@PistolThank you! I will drink more fluids and rest more. Meanwhile, since yesterday something strange is happening - every time I move my eyes to look somewhere else I feel for a second as if I am about to literally pass out. And this happens since then every single time I move my eyes. However, there are no vision problems. I don't know if it's called vertigo. I lay in my bed the whole day as I am extremely fatigued and so dizzy that I can't literally walk without having something to lean on. However, my dearest very much like to call me a hypochondriac, very lazy, it's all in my head and my favorite "driveller". I feel so lost. I went to the emergency, but they told me they can't examine me unless I have heart attack or insult. What should I do? Are these probable symptoms of other illnesses or it is dysautonomia again? So sorry to bother you like this, but I am so disheartened. I recently started considering quitting my study due to very poor health that I have. Thank you to all of you who take their time to answer me!

[MomtoGiuliana]

Dizziness, vertigo, severe fatigue and presyncope can definitely be symptoms of dysautonomia.

My experience is very similar to Pistol's.  When I am so unwell that I cannot sit or stand, 24 hrs of IV fluids usually helps tremendously.  It's hard to get doctors to understand this however.  If I cannot get IV fluids, a large amount of salt, fluids and also compression hose help.  If your neurologist believes you have dysautonomia I would try to see the neurologist again and let him or her know that the treatments prescribed are not working for you.  There are other meds that could be tried.  Unfortunately this condition requires patience--and this is very hard when you feel so poorly.

[TheBaxter]

@MomtoGiulianaYesterday I drank about 1 flat teaspoon of salt with almost 2 liters of water at once and after an hour I finally was able to fall asleep and today, when I woke up, the flare up is so alleviated! I feel definitely better and am finally able to implement my daily tasks after a cup of coffee! Also, I wanted to ask how often do you drink salt with fluids or only by flare up?  It feels like being alive again. I am able to walk and move my body without the feeling of passing out! Looking forward to visiting GI for my gastroparesis as every three days I drink pills for alleviating diarrhea. I will tell her about my dysautonomia and gastroparesis and will see what will come out of all this visit. Hopefully, she knows about it and will prescribe something. Thank you so much for your support! I hope that when finally gastroparesis is also handled I will be able to live normally again.

[MomtoGiuliana]

@TheBaxter so glad you feel better.  It's best to talk to your doctor about salt intake.  Too much salt can cause problems too.

I only increase salt when I feel poorly.  But I also have talked to my gp and my specialist about this.

[AB+72]

I don't want to diagnose you.  But despite that they said it's not H.Pylori, your symptoms sound like it could be some kind of "gut bugs".  We can get all kinds of things in there.  I think my recent flare up of bad health has a connection to my gut.  Possibly.  It's hard to know because most regular doctors don't test properly for that kind of a thing.  If you're not sure you could always eat things that are good for the gut and getting rid of gut bugs.  Which is what I've been trying to do.  A probiotic is a good idea.  A lot of herbs are anti fungul / parasite.  Garlic is.  Ginger is.  Thyme, Oregano.  Peppermint.  Clove.  Coconut oil.  And then there are supplements you can buy that help gut health.  A lot of people carry them and make them.  And they have ingredients like marshmallow root and slippery elm.  In fact I think I need to add one of these supplements to my diet for a little while.  

I don't know if that would help or not.  But those herbs can't hurt.  Even a supplement for gut health probably can't hurt, even if it's not the direct cause of your issues.  But I know I've been through similar symptoms and mine were alleviated by working on gut health.  Especially the bloating and no appetite. 

 

[Pistol]

I do not oppose taking probiotics or certain supplements but I would like to point out also that dysautonomia causes GI symptoms, GERD, IBS and gastroparesis included. Some may say the GI problems are the cause, others say they are a symptom. In my case they are a symptom.  

[TheBaxter]

@Pistol I am taking probiotics already about two months. I am drinking teas for soothing IG issues. However, there are days when my symptoms are alleviated, but for most of the time, they do persist. I've stopped losing weight. I will leave most of it to the doctor, although I very much think that my symptoms sound so much like gastroparesis. I am already not feeling so alone with all of these symptoms thanks to all of you! I appreciate your help!