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Morning! Well, I read Part 2 last night (going out of order here… oops). SO MANY ‘ah-ha’ moments. I was actually crying reading it & the forum for many of the ‘little’ things: red dots on my skin, labored breathing when I lie down, headrushes, etc etc. Many of these I hadn’t even thought to mention to my doctors because when I go in with a list of 50-100 (I’ve lost count) symptoms, the doctors look at me like I’m exagerating & hardly even look at it. Thank you, thank you, thank you Dr. Diana… there is HOPE again!
I ran out & got a cervical collar last night. I put it on to read Part 2 last night. I typically can’t lie on the couch with my head on a throw pillow or the armrest without a horrendous headache & neck pain settling in. I could with the collar though! I went to bed with it on & made it about half the night in the collar, I woke up & found it on the floor this morning! I’m now sitting at my desk job, wishing I had it with me. My neck is tight, shoulders burning, & my back is tingling.
I also took the ZZ combo; regular strength of both. I assumed the Zyrtec was the one WITHOUT the decongestant? My question is: I know you say you take a double dose… but how many mgs is that of each one? Because they make an extra strength Zantac- are you doubling the regular or extra strength? I didn’t notice a huge difference when I woke up (although I overslept by an hour because I forgot I had be in early today and woke up with my adrenaline in high gear; I’m expecting a crash shortly.).
I’m anxious to see my rheumy 6/11, explain all this, & ask for some Diamox! It can’t hurt to start the baking soda pills now, right?
Thanks again, such a blessing to have found this!
This is only what my dr prescribed for me! Not medical advice. I am on Zantac 150 twice a day. I take 10mg Zyrtec twice a day too.
Of course! I will wait for ‘official’ dosing until I see my doctor in June.
Does the generic work ok too? Or do we need to stick with the name brands (this stuff is pricey! but I’ll pay it to be better!)?
Of course! I will wait for ‘official’ dosing until I see my doctor in June.
Does the generic work ok too? Or do we need to stick with the name brands (this stuff is pricey! but I’ll pay it to be better!)?
Welcome to Pioneer-land! Although I used to take the same dose as Palomino, I’ve been able to go down a bit on Zyrtec (perhaps because I’m on Cromolyn? I’m not sure). But there are also patients who eat this stuff like candy, use other antihistamines, use epi-pens on a regular basis, and are barely getting by. I know two patients who have “true mastocytosis”, as opposed to most of us, who have Mast Cell Activation Disorder, mediator (-). Bottom line? Everyone is different. Everyone’s lab work is different. Everyone’s dosing and additional medications will likely need to be tailored to their body, and their body’s response.
Many years ago, I learned that Zyrtec helped me (it was still by prescription back then!). If I ran out, I’d call my neuro in a PANIC!! Nothing else worked, and I HAD TO HAVE IT. It was what is considered now to be a “double dose”.
By all means, talk to your doctor or mast cell specialist. And be sure to listen to your body. If yours is as noisy as mine is (ha), it will let you know how much you need. And don’t be surprised if your dosing goes up and down a bit, too, OK? Variables such as the weather, your diet, your sleep, etc. will also come into play. Keep us posted! 🙂 DianaDr. Diana, have you read Dr. Theoharides research into hydroxyzine (Atarax) on his “mast cell master” website?
http://mastcellmaster.com/http://mastcellmaster.com/documents/IJIP-MS-hydroxyzine.pdf
“A PILOT, OPEN LABEL, CLINICAL TRIAL USING HYDROXYZINE
IN MULTIPLE SCLEROSIS”
Table I. Hydroxyzine’s properties relevant to MS
• Anxiolytic, but not muscle relaxant
• Partial mast cell secretion inhibitor
• Partial BBB permeability blocker
• Penetrates into the brainI am doing a trial on Atarax and I am seeing better control of my ADD-inattentive than I had with either Concerta or Adderall! I sleep REALLY well at night too. I am going to ask the Neurologist about doing a trial on my teenage POTSIE/inattentive son. He can’t tolerate stimulants due to the anorexia he gets on them and he’s already on the thin side and just going into his big growth spurt. He’s been doing much better on NasalCrom and Zyrtec but I’m hoping the Atarax will help him like it does me. Anyone else find Atarax helps their brain fog?
My best, SweetFeatherDr. Diana, have you read Dr. Theoharides research into hydroxyzine (Atarax) on his “mast cell master” website?
My best, SweetFeatherHi SweetFeather, I don’t think I saw it before, but I DO know that hydroxyzine is LOVED by mast cell patients. I should probably do a video on it. I you had a positive response to any of the H1/H2 antagonists, you will likely love hydroxyzine.
BTW, I see that your son is on Nasalcrom, but not Cromolyn (systemic dosing)? That may make a huge difference, too. My orthostatic intolerance improved dramatically, and my son started to gain a little weight after he got on it. Nasalcrom is the same stuff, but only goes to the sinuses. We need Cromolyn (or Ketotifen) all over our bodies! Will you check into it, and be sure to watch the video about how to have it made inexpensively (“Cromolyn costs HOW MUCH?).Isn’t it great to have pills to help us out? Please keep us posted, but you are absolutely correct. I don’t think I’ve spoken to any mast cell patients — mediator (-) or not, who didn’t do well on hydroxyzine. Keep us posted? 🙂 Diana
Sweetfeather, can you also share what, if any other, symptoms are helped by taking Atarax? You mention sleep improved, and ADD symptoms. Are you also saying it helps your brain fog?
I am wondering where this might fit in with treatment plan for those of us with EDS, Hyper POTS, CCSVI, MCAS, etc. I’m on Diamox, and it helps, but not getting complete relief from my hyper POTS and headaches/neckaches are still popping up. (I do fight acidity and had another blood draw to check on that today, so we will see where that is at)
Thanks!
Sweetfeather, can you also share what, if any other, symptoms are helped by taking Atarax? You mention sleep improved, and ADD symptoms. Are you also saying it helps your brain fog?
Great questions, ourfullhouse! Can I butt-in for a sec? Zyrtec is a metabolite of hydroxyzine (kind of a first cousin, if you will). Like most antihistamines, it has the potential for drowsiness. Interestingly, though, it also helps with anxiety, but we’re not supposed to use it for that (or it loses effectiveness for that, more accurately) after about 4 months. Having said that, we are Zebras, and I am curious if it may help brain fog purely by its antihistamine effects on our vessels (histamine makes them dilate. Antihistamines help get more oxygen to our brains, I would think, by preventing some of this dilation.) I believe that is how mast cell medication helps our orthostatic problems, too.
Hydroxyzine can sometimes cause over sedation, if mixed with other drugs (like my beloved xanax). That’s not a great combo for brain fog, I think. But hydroxyzine helps a little bit with pain control, too, especially when mixed with opioids (if you can tolerate those . Love that. The only reason I reached for Zyrtec first was because hydroxyzine can cause tardive dyskinesia (head rolling, lip licking, weird tics…). Miss Optimistic thought, “Oh, great, I’ll be one of the folks to get THAT!” (Like my teens aren’t already embarrassed by me. ha).Again, mast cell patients usually love it, though. For now, I’m personally sticking with Zyrtec purely because it is “good enough” for me. I’m looking forward to hearing about your response to it, both right away, and a year or so later… 🙂 Diana
Dr. D,
Like I mentioned, Zyrtec makes me a zombie, really. Brain fog is worse, fatigue is worse and I get this brain “numbness” kind of feeling. I cannot function on it at all. Gave it 2+ weeks and it only got worse the longer I was on it, with no noticeable trade off of reduction of any of my other symptoms. To say that it gives me a sedative effect is putting it mildly. lol.One thing I will share is that I too have had a battle for pain relief options because most narcotics (all the ones in the direct family of morphine, vicodin, percocet and also tramadol) make me severely itchy. Not a tiny itch, a “I’m going to scratch my skin down to the bone” itchiness”. This is compounded by the fact that when this happens in a hospital setting they always want to give me benedryl, which when given to me via IV, makes me faint (I think I have figured out that is lowers my BP immediately for some reason. I can take it oral with no such reaction). For a while I was using Duladid, but after a year on it, I also started getting itchy and nauseous from it. **sigh**
Then, my neurologist tried me on all sorts of meds (Trileptal, Savella, Zonisamide, etc.) and I reacted badly to all of those. She then went to “old school” pain meds, and had me try Talwin Nx (Pentazocine and Naloxone) and it was a God send! It works really well for me, no itching and I can function/non drowsy when I take it. This is all great for at home use, but in a hospital setting, they don’t use this drug…ever. With as many surgeries as I have had it is crazy trying to get pain relief that does anything for me. Last one they tried Demerol, but it is so short lasting and they wouldn’t budge the hospital’s standard dosing for me, even though they could see I was in extreme pain. ARGH. So, I now try the Duladid with a non Benedryl antihistamine and some for the nausea (though a lot of times it takes oral nausea meds and a seasickness patch) and that is better than the Demerol.
All that to say has anyone else ever tried Talwin for pain?
Hi ourfullhouse,
Fascinating how our bodies react sometimes, isn’t it? I haven’t tried (or needed to try, knock on wood) many pain meds. Even a kidney stone was basically manageable UNTIL I got this “frozen shoulder” which DUMPS massive amounts of inflammatory cytokines into our bodies! It’s almost like it happened to confirm all I’ve been researching — my inflammation obviously went up, I ached like I had a very high fever (IL-6 and some IFN’s do that), and pain is now a part of my world. AS PREDICTED, my intracranial pressure went up, too! I’m doing everything I can to reduce the inflammation and acidity, and return to happy body/happy no-pressure on brain -land. I’m trying to hit the source of the pain (the cytokines, chemokines), but I know there are many that we haven’t even identified yet, much less have drugs to combat them. But at a minimum, the mast cell meds (and I’m on a TNF-alpha inhibitor) help prevent the cascade from going crazy. Having said that, I had to read about both Dilaudid (WOW, that stuff is powerful!) and Talwin. Thank you for making me learn. Those are strong, and I can see how they could help, FOR SURE. Talwin also gives you a mental boost (euphoria) in a “normal” person. That would probably bring us to baseline. 🙂 I’ll be curious to see who else uses these. And somehow, I’m reassured, knowing that those drugs are out there “just in case”. Lots of cautions with those meds, I see, but only we know when the benefits outweigh the risks. And I, for one, believe you when you say you need it. BTW, if my neuro will agree, we can have IV mannitol in the hospital (it’s by IV) to lower our ICP. You have to go through the “but I don’t want an LP” issue, though. Oh, for anyone else reading, if you take Benadryl orally, only the liquid will work well for us, and we should always get the CLEAR (no color, no flavor) Benadryl. 🙂Dr. Diana, please jump in anytime! Thank you so much for doing so! I’m sorry about your shoulder. My mom has frozen shoulder, so I know it can be very painful. I am very fortunate I am one of what seems like the few without pain issues as of yet. I haven’t tried Diamox yet. (I’m one allergic to sulpha and I’m going to ask about doing a cautious trial of it.)
Ourfullhouse, I have 25 mg pills of Atarax and it is WAY too high of a dose… it just knocks me out. I could not function taking that during the day AT ALL. I have been taking about half of a pill at night and just a small chip (less than a 1/4) during the day. It comes in a 10 mg pill so I’m going to ask my Rheumi for 10 mg pills instead. There is also a liquid form but I don’t know what fillers it uses. I am allergic to percocet and morphine also. I got a rash and itching with percocet and no rash but insane itching with morphine. The hydroxyzine is supposed to help some pain killers work better but I haven’t used Atarax with any pain meds at all.
How does the Atarax help? I’m not sure what everyone else means by brain fog, so I’ll explain my symptoms. Sometimes, I have trouble “finding words.” I will be trying to say something and if I get interrupted I have trouble remembering my “line of thinking.” There are times I will be talking (or writing)and I know what I want to say and it is like I suddenly can’t access the file I was just in… does that make sense to anyone? But this doesn’t happen all the time. It’s like my brain becomes a sieve or like swiss cheese. So I can be talking very technically one minute, with all kinds of medical jargon… and suddenly it is like ooops! Where was I going with this? UGH, ugh, ugh…. and it feels like I’ve got a little mouse in my brain running around in a maze trying to find the word I want. If I’m distracted, I can forget what I was talking about or the direction I had been going with my conversation. So I stammer… umm, mmm. “What was I saying?” Then when I remember I’m off and running. It is like I’m an athlete doing the hurdles and then tripping and falling… it is hard to get up and jumping again once I’ve tripped and fallen. It is so embarassing. Anyway, the ATARAX seems to really help me with that… to not be a “space cadet”. It also helps me pay attention and listen better than concerta or adderall do. I have much less trouble finding my words, my speech is more fluent, and my thoughts are more coherent. But this is an episodic thing with me… I’m a “space cadet” sometimes and not others. I remember being teased about this in high school. “GAWD…. you are such a space cadet sometimes!” Many people have told me they are shocked I am as intelligent as I am when they got to know me. I always come off as such a “ditz” when I first meet people. I thought it was from being shy or social anxiety, but when I meet most people for the first time… I’m usually standing up!
My best to you both, SweetFeather
Sweetfeather, You are the only person I know who “isn’t sure what brain fog is”! ha. It sounds like you are just on the edge of it. Let’s hope you stay on the edge!
Oh, my shoulder is inflammatory but I wanted to share with you that my set-back looks like it’s from the STEROID shot I got for the shoulder. A strong steroid shot for those of us who have weak immune systems can cause our viruses to go wild again (CMV, EBV for example). Ugh. I can handle pain. But the resurgence of symptoms, feeling like I have a fever, my intracranial pressure going up, etc. is tough!
The good thing is that I know what to do this time, and hope to nip it in the bud.I loved your analogy of being in a race and tripping on the hurdles…
🙂 Diana
Dr. Diana… I’ve had two kinds of brain fog so I wanted to be clear about which type. 😉
1) Brain fog from gluten: became nearly constant and associated with bloating, groggy, slow cognitive processing, and sleepy all the time… (felt slightly drunk from toxins from leaky gut)
2)Brain fog from HyperPots: episodic, awake, usually normal cognitive speed (unless dehydrated or heart rate is really high), slightly anxious or like I’ve had too much coffee… word-finding difficulty and trouble remembering line of thought if interrupted. I believe this is from mast cell activation… metanephrines, histamine, yadayada… in the brain.
So that’s why I always feel terrible on steroids! I try to avoid them like the plague!
Thanks!
My best, SweeFeather
Hi Sweetfeather,
There are SO MANY potential causes of “brain fog” (mine is more like true dementia when it hits). Lack of oxygen to the brain is huge, and can be caused by blood pooling below, hydrocephalus not allowing fresh blood in, medications, lack of energy for and from our mitochondria, etc. Unfortunately, the list is endless! Crazy, huh?🙂 Diana
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