NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › Cetirizine Hydrochloride (Zyrtec) Feedback
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Barbara.
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July 12, 2012 at 6:02 pm #263
Barbara
ParticipantHi,
At last I’m on the path of recovery. I’ve eventually managed to get my GP to prescribe me the anti-histamine Cetirizine Hydrochloride, I have been told to take 1 at night (10mg). I have been taking it for a week and thought I’d give some feedback. Firstly the good news, I’ve been sleeping much better, actually been dreaming (which is a rarity!) so I know I have achieved deeper sleep than normal (which can only improve our condition). I don’t remember waking at all either, which is a great improvement, as I used to wake every 2-3 hours.On the downside, my arm and knee pain has been worse on a morning and this evening I have a stronger head discomfort than usual. I just wondered if this was to be expected (i.e. sometimes you have to get worse, to get better)? I’m not going to be put off by this, as it could just be coincidental and not at all related to the medication.
Of course I realise that this is just part of the management of our condition (I’m still working on getting the rest of the medication!)I just wondered what other people’s experiences were of just taking the Cetirizine Hydrochloride (Zyrtec).
Regards
Barbara
(UK)
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis! and oh, I forgot Arrhythmias – confirmed as runs of Bigeminy and Trigeminy.July 14, 2012 at 12:34 am #2606SweetFeather
ParticipantHi Barbara,
Do you sleep with a soft cervical collar? I experimented with Dr. Diana’s suggestion to sleep with a soft cervical collar and it helps me a lot. I wake up much less groggy when I am consistently using it during sleep. I think it helps keep my neck in an optimal position for the best drainage and blood flow. Try sleeping with one for a week and without for a week to see if it makes a difference for you too.I didn’t get sleepy or headaches from Zyrtec. It helped me a little but I’ve found Atarax (hydroxyzine) works much better for me than Zyrtec. My son hasn’t tried Atarax yet but he prefers Claritin over Zyrtec. I was taking Zyrtec AND Claritin before trying the Atarax. I had a lot of neurological/ear symptoms which have improved greatly on Atarax. Research Dr. Theoharides’ work on mast cells. He recommends hydroxyzine over Zyrtec because it crosses the BBB to stabilize mast cells in the brain. My doctor agreed to let me experiment with dosages of it. I found it made me extremely sleepy and in the beginning I could only take 1/2 a pill at night. I’ve worked up to taking 1 (25mg) pill at night and 1/2 pill in the morning but in the beginning I was only taking small pieces of a pill. Wow! It feels like someone went in and cleaned and organized my brain. My memory, attention, and cognitive functioning is VASTLY improved on the Atarax. It works better for me than either concerta or adderall ever did and I’ve been able to quit taking any ADHD meds. I am stunned at the difference in my cognitive functioning. I also use NasalCrom every morning and evening. It helps me breathe better through my nose so I think it helps me get more oxygen when I’m sleeping. It has cut down on the number of sinus infections/ pnuemonias I was getting. If I feel like my nose is running or stuffy like I might be getting sick, I up my dosing to 4 times a day and it really seems to help keep me dried out so infections don’t have that warm mucus environment which helps them breed. So those are my top two drugs… Atarax and NasalCrom. Others swear by Gastrocrom, beta blockers, midodrine…. gosh, we are all so different! I’m glad it sounds like your GP is listening. Keep trying things (with your docs permission of course) until you find what works best for you!
My best, SweetFeatherJuly 14, 2012 at 2:54 pm #2613Barbara
ParticipantThanks Sweetfeather,
I agree, I actually wear a Philadelphia Collar 24/7 and have done since 2007. It does make a BIG difference to the night-time pain levels and disturbances and you’re right it does keep the head ‘in a good position’ in relationship to the neck, helping with the CSF flow and I’m sure that’s what brings on the immediate improvements.I had tried soft collars, which held my neck firm but not my head. I still had too much freedom of movement of my head but there again, I have instability following a bad head and neck injury, causing ligament damage at the craniocervical junction.
Thanks for the advice on Atarax, I’ll consider that if the Diamox is not effective (or suitable). I have constant tinnitus, so even if it just get’s rid of that I’ll be pleased.
Regards
Barbara
(UK)July 14, 2012 at 3:11 pm #2614Barbara
ParticipantSorry, I meant to say Cetirizine! Just had a touch of ‘old-timers’ as my daughter refers to it!
Do you think the Atarax has helped with any of your other symptoms, or just the brain ones ?
I don’t have much of the stuffy nose problems, in fact I’m the opposite, dry nose, dry eyes, dry mouth.
However, if I ever get a cold and can’t breathe through my nose, I have terrible breathing problems on a night. I breathe in, my throat seems to collapse, and it’s like I haven’t got the strength to push my throat open to breathe out, weird! this only seems to happen when I’m ‘mouth-breathing’.
Regards
Barbara
(UK)
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis! and oh, I forgot Arrhythmias – confirmed as runs of Bigeminy and Trigeminy.July 17, 2012 at 7:56 pm #2629Barbara
ParticipantWell Sweetfeather,
Thank you for your information. I’m well impressed with Dr Theoharides, especially his research work on mast cells (and with regards to Autism). He’s very verbally articulate and puts his knowledge across extremely well. I listened to a few of the video’s and something that struck me was how similar the systemic problems of Autism are to ours. Then I checked on this site and Dr Diana does mention an association.Dr. Theoharides has suggested that looking for raised Neurotensin (I think it was) could be (or may now be?) a biomarker for Autism, as his experience showed it to be raised oftentimes, well beyond the normal level (and the Neurotensin, I believe, is a trigger for mast cell activation).
I’m curious as to whether we would have raised Neurotensin, has anybody ever checked ?
Regards
Barbara
(UK)
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis! and oh, I forgot Arrhythmias – confirmed as runs of Bigeminy and Trigeminy.July 17, 2012 at 8:15 pm #2630Barbara
ParticipantTo anyone not familiar with Dr Theoharides, as I wasn’t, I can recommend one of his more recent videos on Mast Cells
8th Jan 2012
Although it is related to Autism, it tells us a lot about his history and experience and about the Mast Cell Activation process. I’ve tried to transcribe it, I found it so interesting, especially the following, as it might explain why some people suffering from Mast Cell Activation test negative for allergies:
At about 7:00 in the video he says:
“We then go back to the lab and we grow umbilical mast cells, from umbilical cord blood, we take this molecule Neurotensin and we add it to the mast cells and we find 2 amazing findings.One is that the Mast Cell started releasing inflammatory molecules but without necessarily releasing histamines and other ingredients like we see in an allergy and that’s important because if you were to biopsy someone, you look for this so called degranulation of the Mast Cell’s, which explodes like a handgrenade in allergic or anaphalactic reactions. In this case, molecules were being released without this process which means, if you were to send someone for biopsy, you would miss it because the cells will look happily at you.
The second part which was even more surprising, was the following, the Mast Cells, as any other cell type, requires energy and the mitochondria, are the organelles within the cell that produce energy and we already know that about 10% of children with Autism have mitochondria that are not functioning properly, which means that they have less energy to be used for the developing brain and they do not buffer the so called reactive oxygen species, that are actually very prominent in Autistic children. So in Autism we have brain inflammation and oxidative stress, the mitochondria basically control that.
So what we found was in the process of Neurotensin stimulating these Mast Cells, the mitochondria have been broken down, into smaller pieces, moving to the surface and releasing their content outside and you might wonder what’s the big deal, other things are being released. The big deal is that the mitochodria were actually bacteria that millions of years ago became symbiotic with ourselves and they never leave our cells. If they were to be destroyed it would be by autophagy, they are basically destroyed inside the cells.
The moment any mitochondria is released outside the cell, it is misconstrued by the body as an invasive pathogen and the body mounts a massive auto-inflammitory response. So now we have Neurotensin, stimulating these Mast Cells to release inflammatory molecules as well as mitochondrial components which, in their own right, then induced an auto-inflammitory response.
So then we said, can we go back to the children, in whom we measured high levels of Neurotensin and see if this mitochondrial component, which is called DNA is there and in fact it was very high. This is the first time the mitochondrial DNA was shown to be high in any disease state and we published that in the journal of neuro-inflammation. In fact these two papers are the most accessed papers in the history of the journal, over the last few months.”
. . . . . . ahem! er, if it’s the same thing, my ‘Cell Free DNA’ was higher than normal too, just thought I’d mention that.
Regards
Barbara
(UK)
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis! and oh, I forgot Arrhythmias – confirmed as runs of Bigeminy and Trigeminy. -
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