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Not feeling well! Need help! New to this...

Hello just wanted to see if anyone can relate to me and be of help. I was told I have Crohn's just last month. Before then I have also been suffering from daily headaches and numbness on my hands and a tingling sensation. I ended up at the emergency room and they told me that I had vasovagal syncope. And sent me on my way. I have been to drs and they say all compelling stories. My gastro says it has nothing to do with Crohn's. My cardio says he does not know to much about Crohn's and effecting your heart. And neurologist who has not done a full study and has only gone off my MRI from a year ago and my ct scan at the emergency room says it's has to do with the Crohn's. I am taken a anxiety medicine clonazapan and now they gave me one called mirtazpine 7.5mg and I feel like crap take that med. It spaces me out and makes me feel terrible. I feel foggy headed and like I'm floating away. Dizzy as heck and it seems to only trigger my anxiety more. So I am going to stop it. Sorry to be long winded but the thing is that after all this they still cannot tell me why I am having these daily headaches and numbness. And the hospitals will not admit me because they feel like it is not life treating. I wanted to know is anyone out there having these same issues?
 
Hi,

Did you faint when you went to the ER? That is what syncope means, so when they told you that you had vasovagal syncope they were only telling you the reason for fainting; perhaps they thought that it was causing a temporary headache and tingling (it can). When did the headaches and tingling start (and was the onset before or after the syncope episode)?

Do you have any edema in your arms or legs? (ie. do you have fluid retention? If yes, when you press your finger onto the area you are retaining fluid and then release, does an indentation stay for a while on the spot you pressed?) This can cause that tingling sensation or numbing in the extremities.

Both clonazepam and mirtazipine can cause headaches and numbness/tingling and, to be honest, it's probably more likely that they are the culprits rather than the Crohn's or another yet-undiagnosed problem. How long have you been taking them for? If they make you feel bad, I agree that you should stop taking them, however you must tell your doctor and get their approval before! Some medications (especially anxiolytics) can cause nasty or even dangerous side effects when stopped abruptly. Please make sure to check with your doctor!

Finally, a short disclaimer - I am NOT a doctor. My opinions are based only on my experience and knowledge gained as a medical student; they do not to replace the advice of a doctor nor can they be considered medical advice. Just covering my butt here ;)
 
Happy ballerina. Thanks for responding. No I never had any symptoms they started all of a sudden. I never fainted I started with real bad naseau feeling and then the headache with palpitations and my arms to feel numb and tingling. I started to feel like I was going to pass out. The ER said it is anxiety and panic attacks. But after they admitted me they came back the next day and said it was the vasogal syncope. The second time it happened it was at work and same symptoms however I felt la lost of bowl movement and my intestines started to act up. This caused me to rush to the rest room. Since then I have gone to the cardio who says there is nothing going on in that world. He has run almost every test possible. The gastro at first said it was ibs and we treated it as so. Then I visited the neurologist only for him to look at an MRI a year ago and ct scan from the hospital and he said there is no problem. He never did any test on me. The cardio and neuro both said to take it up with my gastro. So we ran more test and came to the conclusion that I have mild Crohn's. He said that my headaches have nothing to do with the Crohn's. My neuro says it does and once I get that treated the other symptoms should go away. It's been almost 4 mths and nothing. My neuro said to take the anxiety meds and it should work. My cardio gave me the antidepresion meds and those I will not take again. But this weekend I feel terrible. Yesterday I came home and I went to sleep at 1 and sleep pretty much the whole night. I still feel tired, weak and fatigued. My headache is still there and I am not sure what is going on with me? I cannot get good answers and the hospitals do not want to admit me. Even with insurance. This is frustrating and I think I'm going to go crazy. I just wants to feel better. And I am lost.
 
Sorry also the clonazapan is 5mg I take half as needed. And I have only taken the mirtazpine for two days at nigh. The first night I took the full dose 7.5mg and that had me like a zombie all day. I took half last night and that also has me feeling like a zombie. I will not take it tonight.
 
Did your cardiologist do a tilt table test? Was he an electrophysiologist? That's a certain specialty that deals with rhythm and electrical issues. Do you have a high heart rate when standing or get presyncope symptoms such as dizziness, nausea a sense of passing out?

Postural orthostatic tachycardia syndrome can explain these issues and it has to do with your autonomic nervous system(which controls things like heart rate, digestion etc). Postural orthostatic tachycardia syndrome isn't a functional or structural problem with your heart so you wouldn't show issues with cardio tests. A syndrome is a collection of symptoms, those with this condition can have small fiber neuropathy which causes the numbness tingling feeling in limbs. It can involve headaches as well, there is a reason for that too but really involved. You may want to research postural orthostatic tachycardia syndrome. A lot of patients are misdiagnosed as having anxiety or VVS(vasal vagal syncope).

Those with POTs(postural orthostatic tachycardia syndrome) are usually dxed by a tilt table test then other tests are run to address symptoms beyond the presyncope/syncope tachycardia.
 
Clash that is vey interesting and that gave me a lot of information to talk to my cardio about. I had one cardio do a tilt table test but it was pretty much lay down and stand up nothing like the actual table moving. I do have to do a real tilt table test on Friday. I will look into that with him thanks. By the way did that happen to you? Also is thisPostural orthostatic tachycardia syndrome a real serious issue? Thanks
 

Lady Organic

Moderator
Staff member
have you tried stopping eating certain food such as reffined sugars, gluten and dairies? maybe worth trying for a few weeks when no other answer can be found or given to you.
good luck
 
Hey - I would try gluten fre if you can be bothered - helps my migraines - I also take magnesium as it helps my tingles and migraines too.

I would ask them to do a catecolamine test for pheochromocytoma just in case. ( it is very rare)
 
I do have postural orthostatic tachycardia syndrome or POTs for short. I don't have CD, my son does.

The current diagnostic criteria for POTS is a heart rate increase of 30 beats per minute (bpm) or more, or over 120 bpm, within the first 10 minutes of standing
But

While the diagnostic criteria focus on the abnormal heart rate increase upon standing, POTS usually presents with symptoms much more complex than a simple increase in heart rate.
And

Many POTS patients also experience fatigue, headaches, lightheadedness, heart palpitations, exercise intolerance, nausea, diminished concentration, tremulousness (shaking), syncope (fainting), coldness or pain in the extremeties, chest pain and shortness of breath
POTs can be debilitating for some but for others it can be mild an not affect their normal lives.

Here is the source for the above info, it's a great site, it's founder is a POTs patient, lawyer and dysautonomia advocate. POTs falls under the dysautonomia range of diseases. POTs is not fatal and can be caused from different issues such as, viral illness, disease like ehlers danlos, sjorgrens, among other things. The top autonomic docs are now testing for autoantibodies and their first study though small did find them. If this proved out it could also be an auto immune illness.

http://www.dysautonomiainternational.org
 
Thanks clash for all that information I will ask my cardio. Dr about it. Since I have the tilt table test on Friday. I will inform you about the result. Thanks
 
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