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Everything posted by Angela

  1. Yes, sometimes I get really bad shakes/tremors and it affects driving (I was driving a stickshift) and walking. Sometimes the tremors are not so obvious but I walk funny, kinda like a limp. Usually during these episodes I have trouble forming thoughts and speaking as well. (I call it feeling like having parkinsons with alzheimers) Clozenapam (Klonopin) helps me immensely with tremors. But having the tremors from the waste down only I have not experianced, it is usually my whole body or just my hands. It was explained to me that the cause is adrenal dumps. I'm sorry I can't help you out with the doc info....I live in AZ
  2. Rama, if you ever get back on the forum how did they find out about the cerebral hypoperfusion? SJ75, did you ever try and did it help?
  3. I was on proponol and it did the same thing to me, first day was fine, I felt actually better but 2nd day was horrible, it completely upset my stomach and by 3rd day I took 1/2 of the baby starter dose I was prescribed and my boss told me to get off that **** because I looked/acted/felt stoned and was very symptomatic. It took a week to get back to the still crappy way I was feeling before starting it. Since your hyper I have read you should try an alpha antagonist such as clonodine but I am scared to try that after my first experiance with a beta blocker. Dani, I guess I could google it but Idk what midodrine does to help? And I think you are hyperpots as well? And I was wondering per a previous post by you what the results of your mri?
  4. jbenz, yes, sorry intercranial....deep left front temperal lobe. sue1234, sorry, didn't see that you said you had mri of kneck. Have you ever had 24 hr eeg? That's when they found out about my left temperol lobe brain slowing and since I was also on a heart monitor they saw resting heart rate 70 but in day time up to 150.
  5. I've never heard of that. All research shows they leave DVA's alone unless they can see the ccm. My neuro is having me do a mrv, wouldn't that show more details? He doesn't think a DVA is related to POTS but I was doing a bunch of reading about symptomatic DVA's and also correlation to epilepsy. I live in Phoenix. IDK. How did you know about sclerotherapy?
  6. Im like Jan, I take Clozenapam (Klonopin) and is a lifesaver. I have terrible adrenal surges, I can't even drive anymore without having to pull over from panic. I have hyperpots. Other things that help with anxiety are magnesium (has a calming effect) and Issie who often posts takes herbal supplement motherswort, she swears by it and I googled it and it makes sense, I am going to try. But I swear by Clozenapam, it stops the tremors within 15 minutes and totally calms me down.
  7. I have DVA in left temperal lobe and my eeg showed brain slowing in same area. Here is what I have found about DVAs. (I also have bad issues with light and movement as described by many in this post: Most patients who harbor a DVA have no symptoms; the DVA is found incidentally during a neuroimaging investigation(13). DVAs are usually diagnosed in young adults who present with various symptoms that often are not related to the DVA per se (11). While symptomatic presentation is extremely infrequent, DVAs can cause headaches, seizures, trigeminal neuralgia, hemifacial spasm, and hydrocephalus. Headache: The most common presenting symptom of a DVA. Epilepsy: No patient had topographic concordance between the DVA location and the EEG focus. By contrast, topographic concordance was found between the DVAs with associated ICH and the EEG findings. When a positive association between a DVA and a seizure disorder is found, the possibility of a coexisting CM or hippocampal sclerosis should be investigated Hemorrhage:High incidence of hemorrhage associated with this malformations are attributed the cavernous malformation.Pathogenesis of hemorrhage in venous malformation: In 1992, Wilson (21) described three potential causes oftransient, sustained pressure elevation within a venous malformationor its distal radicles. First, sustained elevatedvenous pressure may be caused by outflow restriction at thesite at which the trunk of venous malformation enters thecentral vein or the venous sinus as described by Dillon (3). Inaddition progressive venous overload and hypertension can also be caused by an acute increase in intracranial venous pressure that in turn is transmitted unimpeded through the radicles of venous malformation. Finally, partial thrombosiswithin the collector portion of a venous malformation may lead to local increase in venous pressure in the territory deprived of its normal venous drainage.
  8. I have hyperpots, My older sister has ms, my younger sister has abnormal eegs and has passed out and also has weird issues with veins and unexplained massive bruises, and my younger brother has lesion on brain and since young age has been taking siezure and blood pressure medicine. My big sis def thinks it is in genes, we all had the same mother but older sister/younger brother had different fathers so must have been passed through my mothers side.
  9. I just read some about motherwort, think I will give it a shot. From what I read, there is no better herb for "strengthening and gladdening the heart." It also helps with pms, anxiety, and like Issie said, high blood pressure. Thanks for the idea Issie! Can you tell me what brand you use and can you get it at Walgreens/CVS or do you have to go to a vitamin store.
  10. I did something similar, a cd called COHERENCE whereas the concept is like Jangle said, 5 or 6 breathes per minute. It works to lower my bp very well, but only when I am actually doing it. When I stop, the symtoms come back and there's no way one can breathe like that during a normal day.
  11. my last neuro appt. my doc asked me what my most dehabilatating symptom and I told him at this point it is the adrenal surges and more importantly feeling depressed/angry/sad that I have pots. He said I should go to a psychologist....yeah right, another copay to talk to someone who doesn't even understand what we experience! I mean, I'm not going to kill myself over this, I am just sad and a psychologist can't fix pots. I'd rather just talk to someone who is like me and maybe we can have laughs, brainstorm and cheer eachother up.
  12. Yes Potluck, I go to PHX Neuro Associates, my insurance won't allow for mayo clinic. My neuro doc has prescribed an MRV for the head and chest/kneck as he had noticed my kneck is constantly red and slightly also where my kneck veins go up my throat, after I told him about the DVA noted on 2012 MRI deep left temporal lobe (he wasn't aware because he wasn't my neuro at the time). He doesn't believe it is any relation to POTS though, and still doesn't think I have true epilepsy or siezures. I cant imagine that there isn't some type of connection though. I see flashing lights on occassion too and have issues with light especially when motion or other stimuli is going on, gait issues sometimes like Issie, but never tasted blood or smell burning.
  13. My neuro had me get bloodwork and although I take magnesium daily he said my levels are low and to increase my dose. I thought someone had explained on another post how pots patients often have low magnesium levels but now I can't find it. Can anyone explain?
  14. Have you ever had your kneck checked out? I read that the main locations of dva's are the head and neck (40% of cases), extremities (40%), and trunk (20%). Venous malformations typically expand after the Valsalva maneuver and may be flattened with applied pressure. They tend to grow over time in proportion to the growth of the patient. They often enlarge during puberty and pregnancy (due to hormonal influence) and do not regress. Symptoms are related to size and location. Deep cutaneous or intramuscular lesions usually cause discomfort, often in the early morning on awakening or with exertion. Intraoral venous malformations can bleed, distort dentition, cause speech problems, and obstruct the upper airway and pharynx. Thrombosis, swelling, and pain are common in venous malformations.
  15. Were your mri's with and without contrast and did they shoot you with the dye? My 1st mri they were looking for ms and did it without contrast so I wonder if that was why nothing was noted. The 2nd mri was with and without contrast...no one mentioned anything to me until I requested the actual mri's on disk and I found it mentioned in the radiologists notes (from the 2nd mri)
  16. just found out via requesting actual records and imaging that I have a DVA (developmental venous anomaly) in deep left front temperol lobe. (funny, i had an eeg that showed brain slowing in DEEP LEFT TEMPORAL LOBE so was put on siezure meds for awhile but my neuro at the time didn't mention the DVA found in my mri, I guess it was "unremarkable" and unrelated...... in his eyes?). Basically a DVA is a cluster of dilated veins that take an "unusual" course. Sometimes called venous malformations or venous angiomas. From the reading I have done in the last 2 days, this condition can cause epilepsy (due to the malformation pressing on brain causeing exessive electrical activity), headaches, visual problems such as blurred vision, double vision, and loss of vision particulary affecting one eye, ringing or whooshing sounds in the head,memory problems, anxiety and depression, speech problems, and weakness in arm/leg, balance problems. I couldn't find anywhere on the net where it associated it with tachycardia although I found some mention of hypertension. I imagine if my brain is not circulating blood properly or if it is getting stuck up there this could cause tachy and bp issues as my body tries to compensate for irregular blood flow in the brain, which is supposed to control everything else. I'm not like some of the pots people who have blood pooling in my feet and legs, my intuition has always been that it is in my head or kneck area. Has anyone had a cat scan, MRA or MRI that specifically looks at the veins in head/kneck? CCSVI and DVA's are both vascular issues so seemingly has strong corelation to POTS.
  17. Issie, I was going to do the clinical trials for Dr. Driscoll but they were already closed with this round. I am scheduled for the next round of trials though (she emailed me this week) and I believe that her theory holds water. I hope everything calms down for you and you start feeling better. In relation to this topic, I just discovered I have a dva in my left temporal lobe (discovered in mri earlier this year and doc at that time failed to mention) which I would think ties in with Driscoll's CCSVI theory I believe so I am going to ask my neuro for cat scan of kneck and head to check out my veins, I mean, POTS is basically a circulatory issue with body trying to compensate (hr and bp) so if your veins are not working correctly and something is "abnormal" although, my fav phrase from docs is "unremarkable", then seemingly your brain is not getting proper blood flow. Gonna start a topic on this because I wonder how many people might have either DVA's or CCSVI that they know of.
  18. For nearly a year now my upperchest is red, in the upper sternum where it connects to my chest. It is not a flushing like they describe in mass cell disorder, it is constantly red. People ask my if I got sunburned when I havn't been outside for a week. Sometimes it hurts too, like someone punched me there. Anyone else have this? I was wondering if it was due to adrenal rushes or blood trying so hard to get to my head.
  19. I tried to just post something but my internet connection messed up so I will try again......I just got copies of my 2011 and 2012 MRI's. The second MRI noted developmental venous anomaly within the interior left frontal lobe. Just wondering how this could tie in to my eeg also done in 2012 which showed left frontal brain slowing.....hmmm. Does anyone else have DVA's noted on MRI's? http://emedicine.medscape.com/article/338641-overview I posted a link that explains a little about DVA's. I guess the term is congenital anatomically variant pathways in the normal venous drainage of an area of the brain. I'll have to do some more research after work (yes, I am playing at work).
  20. I couldn't choose 1. Top 3 are: #3: vision issues/auditory issues #2 feeling offbalanced, dizzy, feeling like I am falling through the floor #1 changes in personality....I guess from frustration of being sick, scared, depressed and irritable when I don't feel good, not being able to perform my used to be normal activities. I think they call this unprevoked (and in my case somewhat prevoked) emotion which is actually a symptom of POTS And I forgot, panick attach and tremors are no fun either. Maybe that's my #1
  21. I'm sorry. I know not everyone's issues are the same. Often I wish I had a live in caretaker:)
  22. batik, if u actually have someone to put socks on you then you r certainlly going to be okay
  23. well, i am willing to participate in dr dricscolls studies...allergy meds and antizieure and wierd allergy stuff...? better then what everyone else seems to be taking with no prevail. no offense meant please, anyone.
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