This Is MS Multiple Sclerosis Community: Knowledge & Support

I am having severe problems with my ears. They are stopped up, the right ear more than the left and it is horrible. I don't have a cold or sinus or ear infection that I know of.

I don't know if this is MS related or just a coincidence. Does anyone have any comments or suggestions? I did not sleep at all last night and need some relief.

Thanks, CF

CF--Because of my own history of severe, chronic sinusitis and because so many people with MS report having sinus problems, I recommend that you rule out this possibility completely--perhaps a specialist, ENT, would be a good idea; an MRI can detect sinusitis.

When you said, I think "that I know of" leaves open the possibility.

CF what are you taking? i never heard of your prob before but googled and found this:

EAR CONGESTION : Betaseron Side Effects Report #5587967-3
BETASERON problem was reported by a Consumer or non-health professional from UNITED STATES on Jan 03, 2008. Female patient, 28 years of age, was diagnosed with multiple sclerosis and was treated with BETASERON. After drug was administered, patient experienced the following problems/side effects: ear congestion, ear pain, throat tightness, . BETASERON dosage: unknown. Patient recovered.

lyndacarol, I have been kicking around the idea of going to the PCP or ENT. I actually had tubes put in my ears about 13 months ago because I kept having problems with fluid in my left ear. No infection, no sinitus just plain old fluid. This can make your like very miserable. We tried several medications to no avail and the I had the tubes put in. The ENT told my husband that I have a nerve running over my eardrum in my good ear (which is now the one that is killin me) and he did the best he could but he didn't think I would see much sucess with the tubes. He had really hoped he could do more. So now I take Maxide 75/50 just for the fluid in my ears.

Jimmy, OK here it goes:

Maxide 75/50
Effexor XR 225mg
Gabapentin 300mg 3 X a day
Omperazole 20mg
Provigil 200mg
Restoril 30mg or Ambien 10mg (at night and not at the same time)
Rebif Injections M/W/F 44mcg
Tylenol as needed

I hate taking all these drugs. .... If I don't take the Effexor then I will have migranes, I take the omeprazol for my stomach since the effexor is hard on my tummy. Maxide keeps fluid down and my BP. Rebif sucks so I have to take Provigil just to get out of the bed and work. The last exacerbation I had left lots of painful nerves so comes the Gabapentin. Oh yeah and did I mention I don't sleep, even with the drugs I only get a few hours. If I did'nt take them there would be no sleep, I tried that one and I was not a pretty or pleasant person to be around. The insomnia thing runs in my family (Mom, Sister and my oldest son) may be more.

Well theres my pity party for today. Thanks for listening!

Any suggestions Jimmy??

CF

wow c, that's a list and a half.

okay let me see if i can get this straight...

Maxzide -
-hydrochlorothiazide and triamterene
-used for hypertension (and fluid retention in your case)

Effexor XR 225mg
-venlafaxine hydrochloride
-Antidepressant, anxiolytic (for migraines in your case)

Gabapentin 300mg 3 X a day
-an anticonvulsant
-used in the treatment of partial seizures.

Omeprazole
-an inhibitor of gastric acid secretion used in the treatment of dyspepsia , gastroesophageal reflux disease, disorders of gastric hypersecretion, and peptic ulcer, including that associated with Helicobacter pylori infection.

Provigil 200mg
-Modafinil is a eugeroic drug generally prescribed to treat narcolepsy

Restoril 30mg or Ambien 10mg (at night and not at the same time)
-a benzodiazepine derivative with powerful hypnotic properties. It possesses strong anxiolytic, hypnotic, anticonvulsant, amnestic, sedative and skeletal muscle relaxant properties.

Rebif Injections M/W/F 44mcg
-Interferon beta-1a is a drug in the interferon family used to treat multiple sclerosis (MS). It is produced by mammalian cells...

Tylenol as needed
A trademark for the drug acetaminophen.
-Acetaminophen is used to relieve many kinds of minor aches and pains—headaches, muscle aches, backaches, toothaches, menstrual cramps, arthritis, and the aches and pains that often accompany colds.

off the top of my head, i don't know what nutrients might be depleted by all of these drugs, but you can certainly 'google scholar' them to see what might be an issue, like we did recently for gabapentin. drives me nuts when docs don't tell patients what the unintended implications of the meds are.

i had a very quick look starting with maxzide, and found an unsupported assertion that it depleted calcium, b9 (folic acid) and zinc. if you care to try to confirm this sort of claim, you can try searching google scholar with terms like thiazides hypozincemia and such.
you can get into this for your whole list to see what kind of issues the meds can be causing.

cheerleader got rid of her migraines using
1000mg. omega 3
2,000IU vit. D
25 mg. DHEA
calcium/mag/zinc
along with healthy eating and exercise.
certainly omega 3, D3, and cal/mag/zinc are beneficial in ms also.
i don't know much about the endocrine system yet but i think zinc is one puzzle piece that helps it work properly.

we did look at gabapentin nutrient depletion recently, in the 'types of ms pain describe yours' and 'sleep issues' threads, by tt89 and miss feisty.
anyway, magnesium is certainly helpful for various kinds of tension, it can even be used to treat tetanus.

i'm not sure about the omeprazole. if the sphincter isn't working properly i'd wonder if it was spastic. do you suffer from spasticity elsewhere? if so... magnesium.

sorry to hear that rebif is knocking you out. i wouldn't know what to suggest instead of provigil..

as for the restoril.. magnesium might very well help you with sleep issues, in addition to migraine problems. and spasticity..

interferon is produced by mammalian cells and is hypothesized to work because it's anti-inflammatory. when i read up on rebif i decided to support my own cells' production of interferon. at the time, my research led to the idea of d3 supplementation. my lab tests confirmed that i was well below the 100nmol/L that is associated with the lowest risk of MS.

d3 and magnesium are notably good for odd aches and pains too.

so the next questions are: how's your diet? do you take any nutritional supplements? are you dehydrated?

Thanks Jimmy, you work so hard to find out how to help others. You are indeed an angel ':D'

I am at this time not taking any supplements.

I only drink water and herbal tea, plus a bit of coffee in the morning. I'm sure I am dehydrated, I never get enough water. I try but sometimes at night I will try and remember how much I drank and can't remember so I'm sure it was not nearly enough.

My diet could be better. I know this is just an excuse but when I feel like crap I just eat whatever is available. Not a good thing.':('


I plan to spend some time Monday (I am off that day) to search the web for the best place to buy some supplements and get them ordered. Unless you have a great place thta you get yours?

I thank God that I am working from home now. There are days I could not get up and go in to an office. This is the wonderful world of REBIF.

Anywho, thanks for you help!

CF

aw thanks cf, i do what i can and the sad truth is that a good chunk of my efforts to help others involves shorting my own schoolwork... this is way more "fun" for me :S lol!

i am glad you are open to considering some supplements. with the gabapentin alone the list of depleted nutrients is just WRONG to inflict on an MS patient.

it sounds like your fluid intake choices are good, but just a bit short. i have the same problem getting enough fluid in. i made a rule for myself to keep a glass of water on my desk as i work. at least if it's sitting right there i'm more likely to take a sip!

it is certainly hard to eat well when you have no energy. it's making me wonder if meals on wheels ever delivers to ms-ers. that would be cool.

working from home is great for those crappy days. but let's get you feeling better

i don't buy my supps from any particular supplier really, it's sort of all over the place. i get a 20% discount at the store where my roommate works so that's kind of the main source right now.

how's your access to bloodwork for nutrition? do you have an insurer that will cover it? i'm going to suspect the answer is no, but just thought i'd check. a d3 test is a pretty important one, i'd look into pricing that if you are interested.

anyway. here's a shopping list to get you started.

d3 - take 4000IU per day
calcium - 1200mg per day
magnesium - 600mg per day in divided doses (half by itself at bedtime)
zinc - 50mg per day (in the morning)
vitamin k - 100mg

b-50 complex - 1 or 2 per day, with lunch say

consider a quality daily multivitamin/mineral

omega 3 fatty acids/fish oil - 2000mg per day (i take only 1000mg at bedtime but that's just so it doesn't repeat on me when i'm awake to know about it)

a good hit with the antioxidants helps too - vit A helps your body make its own rebif, vit C helps your body use all these supps, and E helps your blood vessels do what they're supposed to. there are decent chewables out there for the A-C-E combo.

take care not to overdo your intake of the fat-solubles - A, E, D... but do look up some studes to see exactly what people have done to end up with excess/toxicity - it's usually ridiculously high daily doses over quite long periods like months or years.

ideas to consider:
LifeTime has some decent liquid products out there so that it's not more pills to take - their calcium citrate with magnesium and a bit of D3 is decent, and they have a straight liquid d3 also.

you do need to take some of the daily mag away from your d3. all the mag fans on here are lining up for 'natural calm' a powder that you mix in hot water and drink like an herbal tea. it kind of adds a salty/bitter flavour. good idea to take this at bedtime.

magnesium likes potassium, but potassium's not a good one to try and supplement - you need way too much each day for the size of pills that are out there. i hope you like bananas... good potassium-y bedtime snack to go with your mug of mag-tea. bananas have potassium AND tryptophan to send you off to dreamland. or do the warm milk thing for the tryptophan part - it works, science said so

HTH, let me know how things go
JL

now with all that said... can i get rid of an ear congestion possible rebif side effect with vitamins? i have no idea! but we can get you sorted out with things your body does need, and see what happens. i love the quote, your body is not deficient in pharmaceutical drugs!

oh one more thing i read that excess salt can be to blame for fluid in the ear (makes sense, duh!), so if you're taking something that depletes potassium... there's one possible culprit. really hope you like bananas

mayo clinic on meniere's disease:

CF

I sympathize with you - the "stuffed" ears are really annoying. I had that feeling years ago (probably was one of my first exacerbations). It eventually went away but I was left with tinnitus. At the same time I was dealing with the ears, I was also dealing with a tooth infection which I did not know was going on until one day when there was extreme pain. You might go to the dentist to see if you have any underlying infection.

You have received some really good ideas by the people here - I think the supplements should be at the top of your list. It looks to me like you are taking some major medications and you need something to counteract some of their actions.

Good luck
Sharon

okay im sorry about this sharon but it had to be done. just because of the tinnitus and infection at the same time... would you have been in the low zinc/tinnitus/normal hearing group?

Auris Nasus Larynx. 2003 Feb;30 Suppl:S25-8.Links
Zinc deficiency and tinnitus.
Ochi K, Kinoshita H, Kenmochi M, Nishino H, Ohashi T.

OBJECTIVE: To determine if there is a correlation between serum zinc levels and audiometric performance in tinnitus patients. METHODS: Seventy-three patients participated in this study. Patient's age was restricted to 20-59 years... RESULTS: There was no significant difference in serum zinc levels between patients with tinnitus and controls. However, patients with tinnitus who had normal hearing had significantly lower serum zinc levels compared to controls. In contrast, no significant difference in serum zinc levels was found between patients with tinnitus who had hearing loss, and controls. A significant correlation between average hearing sensitivity and serum zinc level was observed. CONCLUSIONS: These findings suggest that zinc is involved in the generation of tinnitus, especially in patients whose hearing is relatively normal.

disclaimer! : that is not by any means to say that zinc is the only nutrient linked to tinnitus...

I sounds like ear wax and is probably not related to MS. Just buy some vegetable glycerin plus an empty dropper bottle from your pharmacy. Put one or two drops into each ear overnight using the dropper. Maybe best to treat one ear at a time. It works for me

gainsbourg

JL

Nope, sorry - not me! The trial you quote was in 2003. I had this problem when I was in my 30's - I am now 66 (so, about 1970). I was left with tinnitus and a bit of a balance problem for a while (ya right, MS) . even complained about "a funny thing that felt like an electrical shock" (ya, right, MS). The ear fullness went away as did the balance problem. The tinnitus I still have. I was diagnosed with MS in 2003! And, another little piece of information - my brother was diagnosed with MS in the '70's. I have always put this information on health forms - I have been seen by many doctors thru the years - the dots were not connected! (or, maybe I should say the neurons!)

Anyway, the info you sent about zinc is interesting. I do have some loss of hearing in the affected ear. I have never had my zinc tested - maybe I should. Good, fast reseach JL - you are amazing!

CF - you should check for earwax but I kind of doubt this is the problem

Sharon

Gains,

It not wax, since that would be easy to remedy. I have this every so often and the dr's have never said I have excess or built up wax. It is just very very bad this time.

Sharon,

I think it is an exacerbation. I have tinnitus left from a previous exacerbation, kind of like what you were talking about. This would be my 2nd flare in the last 3 months. No change in my MRI's but every time something like this happens it leaves lingering problems.

Jimmy,

Some answers to other questions. I doubt my insurance would pay for blood work for nutritional purposes. I will check to see. The maxide is a Potassium saving diuretic. I would not take it otherwise. My Mom takes a presrciption dose of potassium due to heart problems. I drink the superfruit teas, such as acai green tea and pomegranate green tea (very high in antioxidants), also drink some red teas. I wonder if you could mix the MAG with one of these teas? The Omeprazole is taken since I have a Hiatal Hernia and some history of ulcers. The EFFEXOR is not good on the tummy if you have ulcers.

I am going to start my research. Thanks for everything.

CF