I've been on Phenergan for quite a while now, daily for at least 6 months.  Was PRN before that.

It's starting to not work as well as I've gotten sicker.

My Nausea is constant and the Phenergan has never gotten rid of it but allows it to ease enough to go to sleep.

I've been on Zofran in the past but it started to all the sudden give me severe migraine like headaches that last about 36 hours.

So keeping in the same "family" of Phenergan my PCP gave me a scrip for Compazine.

I know it's in the same family but some of the side effects are way different and very scary compared to Phenergan.

Any input???  I know I'm always scared to try a new med, but this is aggravating.

Second question.....

I've been on Klonopin for 2 years for Hyper Adrenaline, it also isn't working as well as it did.

I'm one that doesn't like to just keep increasing on a same Med because I think our bodies get used to it.

Some info was passed to me that Ativan is being used in Masto for help with some pain, nausea, and anxiety, and that it "binds" the mast cells.  Anyone taken this???

I've tried Xanax but it gives me a "hangover" type feeling for a couple of days.

My current regimen is:::::

AM
Florinef 0.1mg
5MG Cortef
150 mg Ranitidine
10 mg Zyrtec
0.5mg Klonopin
800 mg. Ibuprofen
60 mg. NP Thyroid (generic Armour)
12,000 units Creon
Aloe Vera Juice
Probiotics and Enzymes

Noon
0.5 mg Florinef
0.5 mg Klonopin
5 MG Cortef

Bed
0.5 Klonopin
150 mg. Ranitidine
25-50 mg. Hydroxyzine Pamoate
75 mg. Benadryl
25 mg. Phenergan
5 mg Percocet
800 mg. Ibuprofen
12,000 units Creon
100 mg. Gabapentin

PRN with more Antihistamines, usually the Hydroxyzine.  PRN more Phenergan.  PRN Epi-Pen (haven't used it yet)

As you can tell by my meds I am WAY more symptomatic at night.  In fact all of my "episodes" have been late at night which is why I don't have an accurate Tryptase test.

I try not to take much of any one drug or get my system used to it.  I think the Zyrtec is getting less effective but I don't know what to switch it up with.

I have bad reactions to Claritin, Allegra, Chlorpheniramine.
Bad reactions to other narcotics other than the Percocet which is why I only take one 5mg. and soooo much Ibuprofen.

Thanks for any input!!!

I take large doses of Ativan I do it only at night just small amounts during yet day I find it had helped me a lot I also take atarax that combination stopped my nausea but I also take xyzal 10 mg day and 150 of zantec twice a day as well as other meds ugh

Hi All,

Thanks for the input.  UGH... didn't know that about Compazine, guess I won't try it.

Wish there was a big giant list of drugs and Mast Cell effects.

To answer your questions.......

No I don't see a Mast Specialist yet......... Dr. Castells or Afrin are in the works for our December trip.

Information has been submitted and we are just waiting.

My Immunologist here is the one that first gave me a DX of some kind of Mast Cell problem based on my Chronic Urticaria Panel coming back really high, showing "auto-immunity towards mast cells and basophils".

He is by no means an expert but is very open minded and will talk to anyone really.  He has 2 of us he sees that are very similar.  Though my friend has more respiratory problems than I do.

He has wanted me to get a bone marrow biop but can't get it covered without an elevated Tryptase which I've never gotten since I've never been able to get my blood drawn in the 3 hour time frame of an attack.

My current diagnoses are as follows, they are not complete, hence the trip to Ohio and hafl the Eastern US in December, I will also be getting a Genetic and Mito work-up.

Main DX: Dysautonomia with POTS and Neurocardiogenic Syncope
Small Fiber Neuropathy, verified by skin biopsy
PolyEndocrine Failure, exact type and cause still being looked at.....
     Hypo Parathyroid with suspected atypical adenoma
     Hypo Thyroid and Early Hashimoto's with Benign Complex Cysts
     Pancreatic Insufficiency
     HypoGlycemia and Hyper Insulin
     Hypo Pituitary, suspected from 2nd Adrenal Insufficiency and hypogonadism including premature ovarian failure.
     Adrenal Insuffiency, secondary, low ACTH and Cortisol
Possible MEN or APECED
     
Biliary Dyskinesia, gallbladder only works 17%
Vestibular Inner Ear abnormalities with 2 types Nystagmus
Minor Chiari 1 Malformation
Unknown AutoImmune, possible Sjogren's but negative AB's.
Some type of Connective Tissue Disease, working on exact.

So those are all the majors, there are lots of little minor things too.