Cry For Help :'-(

[Annamaus1977]

Hi at all,

its a very hard time for me.

You can see it on my many questions, them are always in my head.

So I would like try to tell you about it a second time...

Im so desperate right now, with all these strange symptoms and without diagnosis. I always cry... because I feel so sick.

At the first moment, as I found this forum, I was so happy, because I had thinking, yes it is Pots whats making me so sick.

But now, I dont know, wich desease I have. I was 14 days in the hospital for Neurology, and all what them found is, a fast heart rate and constriction blood vessels (capillary) in my arms, hands and my legs and feet. They make many tests, a sweattest from my hands, blood tests and so on... but these tests shows no typical Pots.

So I have to go home tomorrow and I have no idea, how does it going on?

I hope it is okay for you, when I wright down, all my strange symptoms. I would be glad if you help me and send me your ideas or you tell me what symptoms familiar to you, which of my symptoms you also have?!

1. I have a fast heartrate just when Im upright

*but now my pulse is just 85bpm when Im upright, because the Doctor gaves me today an beta blocker like Metoprolol.

2. I have very strange pain in my neck and back of the head, if I speak, if Im sitting, if Im upright.

3. If Im sitting and talk, it makes me go dizzy, the pain in my neck getting worse. And I feel a tight belt around the chest ans weak arms.

The same procedere if Im upright. Also if Im just sit, no talk.

4. If I just talk to someone, I get these neckpain and headaches in the back of the head, it makes me dizzy and I feel a strong tingling sensation on the head and face and all teeth hurt me. It does not matter, if Im standing or laying down. I feel also a tight belt around my chest and weak arms.

5. If Im standing, my legs, feet, hands and arms are red/blue. Just if I let my arms hang down, are they red and blue.

6. If I lay me down, my feet, legs, hands and arms have they normal color.

7. Most of the time I have cold feet, hands and a cold nose.

8. I can walk 1 hour, but it makes me a little bit dizzy and I have the feeling of the tight belt around my chest. Thats just possible without talk, if I woud speak I woud have the problems with dizziness and pain to my neck... and so on.

9. I can take a hot shower and it feels good to me

10. I have constriction blood vessels (capillary) in feet and arms, hands and legs.

11. I have a dry red tongue and it feels like I ate something sharp.

12. It also feels in my throat, it burns like sharp food...

13. Everytime I have a bit nausea

Im sure, I've forgot something...

I hope, you know what I mean, because it is very difficult to me, to say it in english.

Please help me, I need you so much...

Andrea :'-(

[MomtoGiuliana]

The symptoms you are describing I have seen at various times described by others here on the forum, except perhaps #11 and #12. Also, it's true that typically POTS patients do not manage well in a hot shower. However, there are different causes for POTS.

So you were not diagnosed with POTS (I think you said you had a tilt table or some sort of test where they checked your heart rate standing and sitting or lying down)? It is a change in heart rate from sitting/lying down to standing by 30 beats per minute, that defines POTS. The other tests you describe, sweat test, etc. do not diagnose POTS. But many on this forum have had these tests done. These are helpful for possibly understanding the cause of your POTS or identifying other conditions.

I hope the doctors have a plan of action and are not just sending you home to cope with such severe symptoms with no diagnosis or treatments to try--or a specialist to follow up with. It sounds like they started you on a beta blocker.

If you have dysautonomia it can take time to find the treatment that works for you and to start feeling better.

[corina]

HI Andrea!

Glad to hear your hr dropped, metoprolol is a commonly used bb in treating POTS. As far as I can tell I seem to have the same circulating problems, I wear compression hose and don't worry too much about it (my cardio doesn't either so I see no reason to)! The circulation problems correct themselves when lying down so they get a normal color like you mention.

I am currently exercizing walking, my latest record is 16 minutes, I can't walk and talk at the same time though. It seems to me that we have a lot of symptoms in common, although I can't relate to the neck problems. Have you asked your doctor about that? I am pretty sure that, although you're feeling this bad, your doctors wouldn't send you home when you are in any kind of danger!

I hope that this helps you some what.

[BeforeTheMorning]

Hi,

Your English is good and we can understand it. We also understand how hard it is to be going through all this. That time when you don't know what's wrong with you and you're going through testing can be so scary and frustrating.

You said that when you are standing your legs, feet, arms and hands go blue/red, but they are okay when you are lying down. I get that especially in my feet and legs which can go really strange colours, generally purple sometimes with red splotches on, and for me the reason it happens is because of my POTS the blood vessels in my legs and aren't constricting properly so that the blood pools or collects in my legs and doesn't get pushed back up very well. This also happens in my hands sometimes, but I don't normally keep my hands still hanging down so it doesn't have much chance. I also get very purple and red hands when I'm cold, and my hands never seem to warm up unless it's the middle of summer. I also get very cold feet that tend to go numb in the winter even when I'm wearing big furry socks, and a cold nose. I also have some of the other symptoms you are describing such as the fast heart rate on standing, nausea, and dizziness. Sitting up and talking to people can make me feel dizzy, but it doesn't all the time.

Has your doctor told you to keep your fluid intake up to help with dizziness at all? If not maybe you should talk to him about that, and see what he wants you to do. It's great that he has already started you on some medication! I had to wait almost a year to start mine, after it was first suggested.

So have your doctors already diagnosed you with POTS and you aren't sure if they're right, or did they not give you a diagnosis?

All people with POTS do have a huge variety of different symptoms, so not everyone's symptoms will be the same as someone else's.

Hang in there, you can get through this and you will get a definite diagnosis in the end and hopefully find something that helps you.

Best Wishes,

Lyla

[Annamaus1977]

Hi,

many thanks for reading this and for your understanding!

I dont have a diagnosis. They just tell me, that my capillarys are constrict and my heartrate is to fast when Im upright, thats all.

Dear Lyla, your blood vessels arent constricting and this is typical for Pots. But mine constricting, it calld microangiopathy I think. And this isnt typical Pots.

I drink 2-3 l the day.

They send me home tomorrow. I have Beta Blocker and compression socks.

They told me, they think it would getting better.

But what about my neck and the other strange things on my head? I was so hoping, they can help me or they make a MRI or something.

Hug you all!!!

[momandmore]

I don't think an MRI would hurt and could help. Have you ever heard of Chiari malformation? Are your joints hypermobile? I have kids with hypermobile joints and they get livedo reticularis, not exactly what you describe by mottling in their legs and arms. I've read that livedo reticularis is caused by constricting capillaries in some cases.

[Katybug]

Hi! I know this is really hard. Don't give up looking for help....eventually you will find a doctor that knows how to help you.

Just so you understand, POTS is a syndrome (a collection of symptoms characterized by tachycardia when upright.) However, POTS is not a disease, so you can have POTS but will still need to look for a root cause or a disease that is causing the POTS. For example, I have POTS and we believe that a combination of 2 things cause it....Ehlers Danlos Syndrome (EDS _ a genetic connective tissue disease) and Mast Cell Activation Syndrome (MCAS - a severe form of allergy. )

I also wondered as I read your post if you should find a neurosurgeon that can properly evaluate you for Chiara Malformation or Cervical Spine Instability (in your neck.) I also go back to the fact that your doctor's suggested you have some form of neuropathy as a result of your chemotherapy. There are types of neuropathy that are known causes of autonomic dysfunction (Pots is one form of autonomic dysfunction. ) Have your doctor's given any more thought or follow up to the neuropathy?

As for your question regarding symptoms, I have at some point had all that you list, except my hands, arms, and legs/feet turn red/purple from pooling due to my veins not constricting at all. I also can't take too hot of a shower. I have a whole bunch of symptoms you haven't listed also such as severe joint pain, chronic migraines, severe gastrointestinal symptoms, odd rashes. The pain in your neck and head could be something called " coat hanger pain" which is associated with POTS but normally doctors rule out other more serious conditions before ruling on this symptom.

Stay strong and be a strong advocate for yourself. Big hugs to you.

[Annamaus1977]

Hi girls,

they had made an MRT from my head, a chiara Malformationen they would have seen. Im also havent hypermobility joints. But thanks for your ideas.

I have to correct something:

I CAN take a hot shower, I love it. It makes me feel very good!!! :-)

And my venes are oright. I have constriction blood vessels... kapillary.

You all have purple feet, because your venes arent constricting, thats another problem like mine.

I dont have a Polyneuropathy, the test was ok. The nerve are ok.

And I meant an MRT from my neck and cervical spin.

I thank you, youre great!!! ♡♥♡

Andrea

[momandmore]

I'm not too familiar with it, but I've read that it's important to get imaging of the neck in specific positions to identify problems. With Chiari Malformation, it's best to be upright. For cervical instability, they take images with your neck in different positions.

I'm not an expert, but I suspect dyautonomia is going to have huge individual variation because when things go wrong, they don't always go wrong in the same way when there are so many places and different ways that things can go wrong in the human body, if there is an underlying weakness and/or it gets knocked out of whack because of some stressor. For one person, it could be capillaries constricting; for another, it could be capillaries failing to constrict. In either case, the body is not doing what it's supposed to to maintain proper and efficient balance of all it's parts and functions. For POTS dysautonomia, you will have the high heart rate upon standing, perhaps even if the cause is constriction of capillaries--though I understand how different people and doctors might see it differently.

My own doctor told me I have "POTSy dysautonomia", not POTS. I have not had special testing, not even a tilt table test. I don't know how I would do at a tilt table test now, since I am much, much better now than I was before. I am positively sure, though, I would have "failed" a tilt table test had I had one during my bad periods. In any case, it was obvious to my doctor after seeing all my other testing that I did have dysautonomia and it's more like POTS than anything else. Is it exact? No. And it would be nice to have a clear answer. But even without a clear answer, by doing what works for POTS has improved my life.

I have personal experience with a relative whose legs would turn red with standing. She often had livedo reticularis that indicated a circulatory problem besides the blood pooling. Fatigue, dizziness, nausea, and constipation were constant. The situation of feeling constantly unwell and not being able to do the things she enjoyed became depressing for her and she asked her doctor for medication. The doctor she was seeing at the time felt that her emotional symptoms of anxiety and depression actually had a neurological cause and agreed that medication might help with that and not just her emotions. She was given an SSRI (zoloft) and her symptoms are greatly improved very quickly. I saw her recently and did not notice any pooling in her legs like I used to before. It's very strange to think a medication aimed at improving her emotional state should help her circulatory system but it did. She was never tested, and no doctor ever even hinted at dysautonomia, but she tried something and it worked to make her feel better. Maybe you can also find something that makes you feel better, the beta-blocker or something else, even if you never get a clear answer about what it is.

[Annamaus1977]

Many thanks, momandmore!!!

Hug you... <3

best wishes,

Andrea

[MomtoGiuliana]

Studies have suggested that SSRI's improve symptoms for about 50% of POTS patients. I think the mechanism is still not well understood. But SSRI's are used off-label for treatment. I took Prozac for awhile and it greatly helped reduce my symptoms.

[Annamaus1977]

Hi MomtoGiuliana,

I try Zoloft, I think it is an SSRI? But it makes my symptoms worse, it was terrible. I took them only 3 days...

Now I take Mirtazapin... I dont know if this is the right way... I take them since 3 month. I can better fall asleep.

Best wishes,

Andrea.

[MomtoGiuliana]

Yes Zoloft is an SSRI.

SSRI's take time to be effective.

I felt worse for the first two weeks I was on Prozac. I seriously considered stopping it. However my doctor encouraged me to continue, saying these were side effects that would be short-lived. In my case, he was right. After 6 weeks (!) I started to feel better.

[Annamaus1977]

Hi

and what side effects did you have?

I felt much more anxious, insomnia, restless more pain in my neck an so on... ah, and after I took them I had to go to the toilette... (you know what I mean?)

I'm afraid, that SSRI can make my symptoms worse and then the symptoms dont get better no more.

Since I had took them, I feel worse than before.

At first I took Mirtazapin since 3 month in the evening. At Monday last week till Wednesday I took just Zoloft in the morning, Mirtazapin I let off. And then the nightmare begins...

[MomtoGiuliana]

Many side effects of SSRI's go away after the first few weeks for most people. Unfortunately they are very uncomfortable and can be significant. This was my experience anyway. Mainly I remember I felt anxiety, and had trouble sleeping, too, as you describe. I also recall more nausea. Also just worse orthostatic symptoms. Apparently, a side effect of SSRI's can be dysautonomia--just what is being treated! Seems strange! However, again, for most people these side effects do go away. I think it is worth trying it, if your doctor has prescribed it, and see if you feel better in a few weeks. It's unfortunate it does not work immediately. If you are very troubled by any new symptoms I would talk to the doctor about them.

[momandmore]

I will also add that when I've heard stories of bad side effects, it often involved higher starting doses. Starting at a low dose or reducing a dose can sometimes be beneficial. I am somewhat inclined to try an SSRI myself.

[Loulou]

Annamaus1977

Hi, sorry to hear your not getting a diagnosis. Did they test you for Raynaud Disease? It cause hands and feet to be cold and turn blue from lack of blood flow.

You should ask for a tilt table test if you think you have POTS, don't be afraid to talk to your doctors, it is your health, your the one dealing with these things daily. My body temperature is always low, so I think that is why mine are cold a lot. Also I have all the symptoms you have listed but 9,11 and 12. I will be praying you get a diagnosis and that you feel better soon.