looneymom Posted April 7, 2014 Report Share Posted April 7, 2014 Tyler had a spell of this that lasted about an hour this morning.It looks just like the video posted but it is only from waist down. His blood pressure was 126/96 and heart rate was 78. Is anybody able to get their blood pressure when this is going on. I have seen this happen off and on and his doctor knows that these happen. Could anyone explain to me why his bottom number of his blood pressure is so high? Could this indicate some type of adrenal surge going on in his body? Just curious if anyone has found an answer to this strange symptom? Quote Link to comment Share on other sites More sharing options...
gjensen Posted April 7, 2014 Report Share Posted April 7, 2014 I intend to ask on the next consult why my pulse pressure narrows in my spells. I can get some odd looking results. Like 160/140 etc. My HR usually elevates and gets pretty high, but not always. At least 100 though. I get a lot of fluctuating during the spells. Generally elevated with surges. I have never had the tremors just effect my lower body. I have also never had a spell where my HR and BP stayed that close to normal. Quote Link to comment Share on other sites More sharing options...
looneymom Posted April 8, 2014 Author Report Share Posted April 8, 2014 I took Tyler's first blood pressure around 11:00 am and then I took another one at 1:00pm. This one was 100/65 and heart rate was was 88. So something os going on but just do not know what to make of it. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted May 6, 2014 Report Share Posted May 6, 2014 Happens to me every so often BP soars to 150/90s yet hr doesn't always go up with it that's an odd feeling. today it happened while I was doing dishes at the sink on the phone with my dad I told em I better get off the phone and finish dishes. Dizzy cold clammy shaking. Laid down my dog jumped up next to me which confirmed my level of not feeling well at the house by myself after laying down for 30 min it lowered ,up and about now moving slower... Heart rate is 60s 70s standing which is an oddity for me sitting now it's 115/84 and. 64 hr. Sorry for lack of punctuation wanted to share while it was fresh on my mind and before it happened sgain Quote Link to comment Share on other sites More sharing options...
looneymom Posted May 6, 2014 Author Report Share Posted May 6, 2014 Have they checked your glutamate levels in the brain? Tyler had a neurotrnsmitter test done last December and these levels were high but GABA was low. The doctor suggested we try a GABA supplement with him but it only helps with moods. He thought the high brain glutamate might be causing the tremors and shaking. I'm wondering if Tyler's tremors is connected to low B6. He had testinng that indicated this was low. So I have ordered the active form of B6 ( P5P) to see if it will help with calm this down. This active form of B6 is supposed to help convert glutamate into GABA. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted May 6, 2014 Report Share Posted May 6, 2014 Interesting. My doc isn't keen on lab tests.i only have a cardiologist. The neurologist said stick with cardio I don't know what I can do for you. Barely got my sodium levels.. Thanks to mayo doc recommendations...I take b12. Multivitamin and Epsom soaks every so often when I have muscle aches spasms. I'll look into the gaba . I have to say I'm so impressed with your knowledge research and intuitiveness with your son. So glad he had your support! Quote Link to comment Share on other sites More sharing options...
IceLizard Posted May 8, 2014 Report Share Posted May 8, 2014 Yes. Sometimes I get tremors, or convulsions and my diastolic bp can be high. I take Librium for these attacks, which enhances the effect of GABA. Quote Link to comment Share on other sites More sharing options...
looneymom Posted May 8, 2014 Author Report Share Posted May 8, 2014 IceLizard,Is this a supplement or prescription? I have been doing more research and I am more convienced that Tyler's tremors are being caused by his high glutamate levels. I am going to try a supplement of P5P which is the active form of B-6. Methyl-B12 patients can absorb this supplement better than the regular B-6. It will convert excess glutamate into GABA. Many people take this at night to help them sleep.Another supplement that will also help lower glutamate is L-Theanine. This is an amino acid that you have to get from foods. However, it can be bought as a supplement. It is found in green tea and a few other foods.Are you doing a gluten free diet? If so, are you feeling any better? Quote Link to comment Share on other sites More sharing options...
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