How to deal with Anxiety and EM?

Symptoms and Treatments
21

To update people on the new compound I'm trying, I am having no problem with EM since going on it! However, it's been less than a week since I started it, the weather has been cooler (except this weekend, but I stayed inside) and I simultaneously went on treatment for a mast cell activation problem. So, it's too soon to tell exactly what is going on, but I'm loving it so far.

The pain lotion contains Gabapentin, Cyclobenzaprine, Baclofen, Ketoprofen and Lidocaine in a base of Lidoderm lotion and wheat germ oil. It absorbs/dries really quickly. It's slightly sticky but the pharmacist had told me that after I apply it I should add a few drops of water to my skin and rub it in and that would reduce the stickiness and help the meds absorb better, and that does help. It's not bad at all. There's a tiny bit of warmth in my feet after I apply it at bedtime, but it doesn't trigger an EM flare somehow.

The mast cell treatment I'm on now (all ordered by a doctor) is Zantac 150 twice per day, Zyrtec twice per day and Gastrocrom 100 mg four times per day (30 mins before meals and at bedtime).

I suspect the mca treatment is preventing some of the food-triggered EM and that's why I'm doing so well. But I may still get EM when I go out into warm weather. I'll be finding out very soon!

Kentuckian said:

Lidocaine is also supposed to be good in compounded lotions for EM. Haven't tried it yet, but I'm about to....

22

HOw do you think Lodocaine compares to Ketamine as the compound used? The one I was given was Ketamine.

Great news to hear that you're doing better! I hope it continues! Too bad you couldn't have tried one at a time so you'd know what was helping.

Kentuckian said:

To update people on the new compound I'm trying, I am having no problem with EM since going on it! However, it's been less than a week since I started it, the weather has been cooler (except this weekend, but I stayed inside) and I simultaneously went on treatment for a mast cell activation problem. So, it's too soon to tell exactly what is going on, but I'm loving it so far.

The pain lotion contains Gabapentin, Cyclobenzaprine, Baclofen, Ketoprofen and Lidocaine in a base of Lidoderm lotion and wheat germ oil. It absorbs/dries really quickly. It's slightly sticky but the pharmacist had told me that after I apply it I should add a few drops of water to my skin and rub it in and that would reduce the stickiness and help the meds absorb better, and that does help. It's not bad at all. There's a tiny bit of warmth in my feet after I apply it at bedtime, but it doesn't trigger an EM flare somehow.

The mast cell treatment I'm on now (all ordered by a doctor) is Zantac 150 twice per day, Zyrtec twice per day and Gastrocrom 100 mg four times per day (30 mins before meals and at bedtime).

I suspect the mca treatment is preventing some of the food-triggered EM and that's why I'm doing so well. But I may still get EM when I go out into warm weather. I'll be finding out very soon!

Kentuckian said:

Lidocaine is also supposed to be good in compounded lotions for EM. Haven't tried it yet, but I'm about to....

23

Lynee,

I haven't used Ketamine, so I can't compare it with Lidocaine. But it seems there is such a wide variety of responses to any of the drugs, from patient to patient, that it's impossible to even guess what will work best for a particular person.

Today it got up to 90 degrees here, and I was in and out of the weather, but I never flared until I got into my hot car at the end of the work day at 6:00. Cars are bad for me! Even then it wasn't as bad as last year when the weather was the same. And it resolved quickly after I got home into the good AC. So, I'm still encouraged.

I forgot to mention in the above message that I also went on Metanx in January and it takes 2-4 months (I think) before you notice improvement. It's a prescription supplement of dietary forms of B-12, B-6 and folate, usually used for diabetics with neuropathy. So that also could be helping by healing some nerve damage, and the more supportive sandals I now wear (Birks' Arizona and Gizeh) may help and I no longer take Omega supplements because they lowered my temperature trigger threshold last summer. All of these things are what I'm doing differently this year, so hard to know which is working so well.

But due to timing of the improvement, and simultaneous improvement in GI problems, I think the mast cell treatment is helping. The GI problems were triggered by food and, more and more, my EM was often triggered by many foods. So I suspect the Gastrocrom, Zantac and Zyrtec have particularly helped prevent some episodes. And maybe the pain compound kept the pain from being as severe as last year when my EM did finally trigger today.

Thanks for the encouragement!

24

Hi Lynee,

Sorry I'm coming into this conversation a little late, I've been very unwell with a virus.

The anxiety will unfortuately be worsening - or even triggering - the flares. When I was having some of the first infra-red scans and laser doppler blood flow scans ever done on an EM patient, back in 1985/6, they asked me to think of something sad, then something that made me scared, then one that made me anxious and finally a very very happy thought. The scans showed a terrible reaction to all the negitive thoughts, basically an EM flare, but the happy thought showed a vast improvement. This is not for psychological reasons, we're not inventing or imagining the pain, but because of the reaction of the bloodflow to the chemicals released as a result of these emotions. If you happen to have EM, your body will react very badly to the release of hormones such as adrenaline, which is released when you're anxious or scared.

I have been through long periods of anxiety about my EM, for example, at university I would always get anxious the night before an exam hoping not to have a flare, which always made a flare happen. Over the years, I've used a technique which is similar to meditation, called centering prayer. I find that it helps a great deal with the pain.

I've only ever used Lidocaine patches, not the creams, and I found that it would numb my foot for a couple of hours and then I would get a horrendous rebound effect, causing a terrible flare. I've actually been having lidocaine infusions and they are giving me good effects and may well offer a good treatment for many people with EM.

I tried propranolol and it had a similar effect to the lidocaine patches, giving relief for a short time, followed by hell on earth. I would emphasise that EM is notorious for it's variability in how patients respond to a drug. My specialist, who is one of the best in the world for EM, told me that she expects that if a drug works really well for one patient, that when she gives it to someone else, it will make their EM much worse! It can work in reverse too, what has been a terrible drug for me could be your perfect drug.

You've had some good suggestions for drugs to look at for your EM. I hope that if you can reduce your anxiety about your EM (not easy I know) that your EM flares will lessen, which would obviously reduce your anxiety even more. I found when I used the centering prayer technique that it really did help.

I really hope you enjoy Italy.

25

Hi - I'm new here. But one thing I have purchased in a Brookstone Bed Fan. It's the most wonderful, helpful fan in the world.

I can go under your covers and you have a little dial on your pillow. It can softly blow a little whisper of cool air or you can get a big blast if you want. If my feet are red when I go to bed they'll be fine in the morning. It's so wonderful and I even travel with it. As long as I can get cool I don't get anxious. This might be something for you to try.

I don't use the fan as suggested because my bed is too high so I just lay it flat at the bottom of my bed, propped on a stool to give the motor air.

You should try it!!

Meredith

26

Thanks for the suggestion! We don't have Brookstone in Toronto, but next time I'm in the U.S I'll look into it!



Meredith Goodrich said:

Hi - I'm new here. But one thing I have purchased in a Brookstone Bed Fan. It's the most wonderful, helpful fan in the world.

I can go under your covers and you have a little dial on your pillow. It can softly blow a little whisper of cool air or you can get a big blast if you want. If my feet are red when I go to bed they'll be fine in the morning. It's so wonderful and I even travel with it. As long as I can get cool I don't get anxious. This might be something for you to try.

I don't use the fan as suggested because my bed is too high so I just lay it flat at the bottom of my bed, propped on a stool to give the motor air.

You should try it!!

Meredith

27

Do you find the Cymbalta helps the EM AND the anxiety. I'm now deciding between Celexa and Cymbalta. I know it's a very personal choice and everyone is different, but I'm wondering about your experience.

I can't imagine that you've had this all your life. It is incredible that you have dealt with this.

cgerula said:

Hello, I have had EM since birth and in my adult life is when it became the worst. I mostly just dealt with tingling intense itching and pain in my feet that would make me want to crawl out of my skin. In my adult life I now recently have been dealing with it spreading to my lower legs, arms and hands. I have for years been woken up out of a sound sleep with anxiety and the feelings of EM. I would have to get up and deal with it for hours until I went on medication. I am now on Cymbalta, gabepentin, and oxycontin. Before I went on meds 24/7, I would take darvacet to deal with the Em and its physical feeling. The anxiety I felt from the Em would wake me up from a dead sleep. I would get up , take a darvocet and each time It would calm down the physical feelings and then the anxiety would disapear. I do have anxiety anytime I am sick and can't take my meds because Having the feelings and anxiety of EM intensely and being sick on top of it is horrible so I go to the dr asap. I also have anxiety about changing climates, medical procedures, operations etc. because it has brought out my Em so bad in the past that I Was hopitalized and taken care of by people who did not understand and medicated me the wrong way and make things worse.

I have always felt that as I calmed the EM the anxiety was better of disappeared. Hope this helps.

28

Thank you and everyone for your help and suggestions. I feel hopeful something will work. After much deliberation about whether I should even go to Italy, I've decided I should. Whatever happens there can't be worse than here and why miss out on a trip of a lifetime with my husband? I'd regret it forever. So I'll deal with the anxiety that seems to hit me in the chest and work on breathing and relaxation. We leave on Tues.

I've come to the same conclusion that your tests showed. If anxiety causes heat flares in my back, etc, why not in my feet? It makes sense. So we work on calming down. I also found that the Ketamine/amitrip combo worked well and then suddenly made my feet burn. I thought I was nuts.

Thanks again for all the support. I'll share about Italy when I return end of May!

starsmurf said:

Hi Lynee,

Sorry I'm coming into this conversation a little late, I've been very unwell with a virus.

The anxiety will unfortuately be worsening - or even triggering - the flares. When I was having some of the first infra-red scans and laser doppler blood flow scans ever done on an EM patient, back in 1985/6, they asked me to think of something sad, then something that made me scared, then one that made me anxious and finally a very very happy thought. The scans showed a terrible reaction to all the negitive thoughts, basically an EM flare, but the happy thought showed a vast improvement. This is not for psychological reasons, we're not inventing or imagining the pain, but because of the reaction of the bloodflow to the chemicals released as a result of these emotions. If you happen to have EM, your body will react very badly to the release of hormones such as adrenaline, which is released when you're anxious or scared.

I have been through long periods of anxiety about my EM, for example, at university I would always get anxious the night before an exam hoping not to have a flare, which always made a flare happen. Over the years, I've used a technique which is similar to meditation, called centering prayer. I find that it helps a great deal with the pain.

I've only ever used Lidocaine patches, not the creams, and I found that it would numb my foot for a couple of hours and then I would get a horrendous rebound effect, causing a terrible flare. I've actually been having lidocaine infusions and they are giving me good effects and may well offer a good treatment for many people with EM.

I tried propranolol and it had a similar effect to the lidocaine patches, giving relief for a short time, followed by hell on earth. I would emphasise that EM is notorious for it's variability in how patients respond to a drug. My specialist, who is one of the best in the world for EM, told me that she expects that if a drug works really well for one patient, that when she gives it to someone else, it will make their EM much worse! It can work in reverse too, what has been a terrible drug for me could be your perfect drug.

You've had some good suggestions for drugs to look at for your EM. I hope that if you can reduce your anxiety about your EM (not easy I know) that your EM flares will lessen, which would obviously reduce your anxiety even more. I found when I used the centering prayer technique that it really did help.

I really hope you enjoy Italy.

29

Hello, I find that Cymbalta has helped alot. I have depression and anxiety and find the anxiety is mostly based around the EM. When will I have my next flare, will I get worse, will my meds work, Will the flare be so bad I have to go to hospital, etc... I started on Celexa and found it made me very sleepy, but that is just me, my sister has been on it for years and does well. I switched to prozak and did very well for a few years and then had to switch to Cymbalta. Benn on it for a few years now and have been doing well in combination with my other meds. I wish you all the best of luck choosing a med that works for you. Take care,

Cindy

30

Thanks. The Dr.'s choice is Celexa for the anxiety, but he's not taking the EM into consideration cuz I dont think he even knows what it is! I heard Celexa makes you tired in the beginning but I don't know if anyone's had success for EM symtoms. Aside from the fatigue, did you find any benefit for EM on Celexa.

ANYONE??

You said Cymbalta is helping a lot, but is that with anxiety or also with EM flares??

I know it's so individual but it's nice to hear other people's experiences.

Thank you!
cgerula said:

Hello, I find that Cymbalta has helped alot. I have depression and anxiety and find the anxiety is mostly based around the EM. When will I have my next flare, will I get worse, will my meds work, Will the flare be so bad I have to go to hospital, etc... I started on Celexa and found it made me very sleepy, but that is just me, my sister has been on it for years and does well. I switched to prozak and did very well for a few years and then had to switch to Cymbalta. Benn on it for a few years now and have been doing well in combination with my other meds. I wish you all the best of luck choosing a med that works for you. Take care,

Cindy

31

Hi Lynee

Have you considered Xanax (it's a tranquilizer)? I thought tranquilizers were the first drugs prescribed for anxiety but perhaps they were also treating you for depression therefore they started with antidepressants.

I have taken Xanax very successfully for anxiety and panic attacks. Your doctor may not agree with me but it might be worth asking about.

Good luck and have a great time in Italy.

32

thanks, but I have Lorazepam.Problem is, it's not for taking every day and all day. My anxiety seems to have become chronic so need a long term med. Will try when I get home.

Italy is not proving easy as my flare up is bad and my anxiety is bad. Not so sure it was a good idea to come. We have to make some changes in our touring plans.

Thanks for help.

Norahs said:

Hi Lynee

Have you considered Xanax (it's a tranquilizer)? I thought tranquilizers were the first drugs prescribed for anxiety but perhaps they were also treating you for depression therefore they started with antidepressants.

I have taken Xanax very successfully for anxiety and panic attacks. Your doctor may not agree with me but it might be worth asking about.

Good luck and have a great time in Italy.

33

Hi Lynee - This posting was done back in March 2012 and I don't know if it is still relevant at all ???

Anyway I will post here and see - I have been put on LYRICA (PREGABALIN) at a low dose to start with 25mg, and have been increasing the dosage to see if there may have been any bad side effects as I can't tollerate a lot of these sort of drugs - Anyway I am up to 225mg at the moment twice a day now and it has improved my pain considerably and only side effect is a bit of drowsiness but that nay with time and not having the intense pain has eased my anxiety a lot ....

It might be worth a try for anyone suffering pain & anxiety - start slowly with dosage and explain to the Doc as to why and see what happens from there .... nothing to lose but there may be lots to gain, seems to be working for me at the moment, it could be what you are looking for .... Hope this helps somebody ...

Regards -

Greg -

(frostbite)

Cooma NSW

Australia.

34

Talk with your doc! Meds are manageable for the side effects and can be started off at lower dose. Don't let the EM decide the quality of life when there are meds to help. The anxiety is real not a function of you not being "strong enough to cope". Noratriptyline is next generation of Amitriptyline and I found did not have as many side effects. Use food to help with constipation - dates/figs/prunes - puree - 1 to 2 tsp/day or 3 tsp, can be spread on toast. Much better than Milk of Mag.

35

Hi Lynee,

I have successfully used Allegron for a number of years for both anxiety and EM. Allegron is one of the tricyclic antidepressants - nortriptyline I think. It was originally prescribed only for my anxiety but we discovered that it also controlled my EM which was an added bonus. The only side effect I have had is a dry mouth but that is only at the higher doses (75mg for me) I currently take 60mg and it keeps both problems under control. (Not completely gone but at a level that is an inconvenience rather than a major problem)

I cannot recommend Cymbalta (which also treats both conditions) as i tried it and it did not work for me at all plus horrible side effects! Everyone is different however and drugs that treat two things at once are pretty useful.

Good Luck in finding what works for you.

Louisa

36

I got hit hard with Anxiety in 2010, it was a build up of extreme stress that was going on in my life. One night I went to sleep after some wine and woke up not being able to breath, thought I was having a heart attack for sure and was going to die right there. Long story short, went to the hospital, they said I must have had a panic attack and sent me home with a script of xanax - Thought all was OK until the next night, I was watching TV with the wife and out of nowhere an instant full blown panic attack kicked in, I could not breath, really freaked me out. As the panic attacks became less and less severe the anxiety was worse each day, lost 30 pounds in under a month, all, the bad things came with it ie: night terrors, reclusive, always nervous etc etc. What helped me? XANAX, the only think that helped me through this, it worked within 20 minutes or so, it made me feel NORMAL and that feeling of normal gave me hope to work through this at the time. Yeah,some people say dont take that, well it helped me 100% get through it which took 6 months to a year or so to stop taking it all together, at one point I just took 25mg before bed and eventually started getting to sleep without them. I did not want to take long term drugs which do come with some bad side effects, XANAX worked righ away and only last 4-6 hours unlike long term drugs which take time and could have long term issues. My neurotransmitters were shot from stress and needed time to heel, the xanax helped me feel normal as I dealt with it. I still have a few which I would only take if I was feeling anxiety due to stress going on. I may have taken it 4 or 5 times in the last 3 years. I developed EM in 2008 and thankfully is wasnt real bad during my anxiety in 2010 - Its bad now, hopefully someone will either come up with a cure or a med that will help. Good luck!

Here is a great forum for Anxiety/Panic attacks and all sorts of specific mental issues/disorders - - http://www.uncommonforum.com

37

Hi jimm,

I think you meant to write 0.25 mgs xanax.

blue