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Strange changes in symptoms


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Just to give you a summary...I currently have POTS and I was diagnosed approx 4 years ago. I became very symptomatic 4 months ago and have been progressively getting worse. I am now to the point where I have been restricted from driving, walking, standing, and various other everyday activities. Now...don't get me wrong...I do have my good times (notice I didn't say days), they are just so few and far between, that it is very hard to see the light at the end of the tunnel.

For the past month, I have been experiencing symtoms that I have not had before. I have spoken with my Doctors and they say that these are not common POTS symptoms, but, I need to know if other POTS patients are experiencing the same things. I just have a feeling it could be related. Ok so here it is....

1. Loss of bladder control - Tested for Infections - Negative

2. Hives whenever I have a rush of adrenaline (BAD) - Tested for allergies - Negative

3. Numbness in feet - starting on the edge with your little toe and the numbness moving in

4. I faint a lot....now when I wake up....I panic! I either don't know where I am, or what happened, or where my son is. I mean things that I obviously know...but I just can't remember.

5. I was at the Doctor the other day and he was checking my legs for strength/reflex. So he was telling me to do all kinds of things with my feet (i.e. push, pull), my legs, and my knees....and I just could not follow his instruction. I could not understand what he was trying to tell me to do and he finally had to physically show me how to do it.

6. I can't remember anyone's name anymore that I meet. If I met them over 3 months ago...I do not have a problem....but past that....and I have no clue. And no matter how many times I meet them....I never remember their names.

What is happening to me????

Current Medications: Toprol XL 150mg, Zoloft 200mg, Topamax 100 mg, Lorazepam 2 mg, Provigil 100 mg, Midodrine 20 mg

Any helpful tips or just knowing that I am not going crazy is all I am looking for.

Thanks for always being there for me!!

Susan Hayden

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Hi Susan,

I have/had VERY SLIGHTLY 1....and a lot of 2,3,5, and 6. But I absolutely cannot tell you what causes these symptoms. As of yet, I do not know enough about dysautonomia to comment, but you should know that you are not alone in this.

I also have (supposedly) Fibromyalgia and Anylosing Spondilitis. I too have thought I was going completely nuts. Maybe someone here can help.


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Dear Susan,

I'm in the same boat, but you sound worse off than me. :)

1. Yes, I have bladder trouble. mostly when I'm really sick(vomiting, coughing) however I do have trouble with leakage when I'm very dizzy and lightheaded.

2. Hives, no-but I do get very flushed at times.

3. Numbness- oh yaa!, It varies between what I'm doing and time of day/nite. I have tingling and numbness in my hands and lower arms as well as my feet and legs. Most often this depends on heat, blood pressure(sitting vs. standing vs. laying)

4. Before I was dx and started midodrine(proamatine) and pressure stockings I black out several times a day. I still have trouble on occasion and I'm almost always confused for a few minutes when I wake up.

5. Not one of my problems, sorry.

6. I've had trouble with names and places for at least 3+ years. I'm often "foggy" and it even takes me several minutes to type these responces. I often forget what I'm taking about or how to spell words or just can't type.(I used to type 80+ wpm).

Take care and rest. One question, do you eat salty foods and wear pressure stockings? They are vital to my not "hitting the ground". Remmember, "It's not the fall, it's the stop at the end!"



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