Tag: chronic daily migraines

Stop Judging Treatment Choices

I find it very annoying that some people become so negative about someone else’s treatment choices.  I feel everyone has the right to decide what is best for them and it’s really rude and disrespectful to trash or put down something someone else decides to do.  Especially if the person says it is helping them.  It’s like everything in life.  Just because it’s not your choice DOES NOT MEAN IT IS WRONG!

This happens in real life and on social media.  Some people on social media just sit behind their computer and spew out hate and negativity towards someone that is either different from them or is doing something different from what they would do.

A Double Blind Study is Not Always Needed

I am particularly annoyed when someone dismisses and says that your treatment choice  is wrong because the treatment has not been published in a journal or that there are no double blind studies.  Or that the FDA has not approved it for “such and such” disease.  Or they state that the information they found is mostly anecdotal and no scientific research has been done on it so it should not be done.  HELLO?  Just because it isn’t published in your scientific journal and there have been no double blind studies on it does not mean it is wrong or not a valid treatment.

Eastern, natural, alternative or non-conventional medicine has been around a lot longer than western or modern medicine.  In fact, big pharmaceutical companies make synthetic drugs to replicate a natural medicine.  The only reason is money.  The FDA has approved 2 synthetic drugs similar to the compounds in marijuana but won’t legalize marijuana.   They won’t approve medical marijuana because a drug company can profit from selling a synthetic one.  Why would you want synthetic when you can get the real thing!

Wake up people!

Not all FDA approved drugs, vaccines or treatments are safe and it’s maddening when people are so close-minded that they don’t see this and think alternative or natural medicine is quackery.  Think about Chiropractors, Acupuncturist, Reiki Healers and Chinese Medicine.  So many people have negative opinions about them but so many people have been helped by them so why would you be against it.  Think about opioid medications.  So many people have negative opinions about anyone taking them but some people like me can’t function without them.  So stop judging someone that takes opioids just because you don’t.  And stop thinking that everyone that takes opioids is an addict.  Think about medical marijuana.  So many people are uneducated about the benefits of marijuana and just think people are drug addicts or losers and just want to be stoned.  And stop trashing my implant!  I get 80% relief of the pain from my implant.  80%!  That’s HUGE!  Just because it isn’t right for you doesn’t mean you have to be so negative about it or put it down.   If a treatment choice doesn’t effect you than mind your own business!

Educate Yourself! 

Most people are not educated in the benefits of marijuana.  Most people are not educated in the fact that it is normal for anyone taking opioids for chronic pain to become dependent on them.   Most people do not know that dependency is completely different than addiction.  Diabetics are dependent on their insulin.   No one would ever consider taking insulin away from a diabetic person.   So stop taking opioids away from people that need it just to function more like a “healthy” person.  Most people have never even heard of neuro-stimulator implants.  And people that have heard of them for migraines have not heard about how different The Reed Procedure is.  My own Stanford doctor acted very unprofessional when I said I was going to do the trial for The Reed Procedure.  She did this because at the time she was not educated in neuro-stimulators for migraines.  She did not believe me when I mentioned the high success rate of The Reed Procedure.  Which is strange because when I did two 5-day inpatient stays for DHE (Dihydroergotamine migraine treatment) she told me about it having a high success rate and it didn’t work for me.

Why would you be against something just because you don’t know anything about it?

In the past 21 years, I have had numerous people suggest treatments to me for my migraines.  Most people suggest treatments based on their experience with it helping them or someone they know.  When I receive a suggestions I say thank you and if it is something that I have not tried nor heard of I do my own research and decide if I want to try it.  If it is something I don’t feel is right for me I just don’t do it.  I don’t tell the person who gave me the suggestions that they are wrong about it because there are no double blind studies.  

I also have suggested treatments that have have helped me to others.  My blog is really my way of trying to help others with migraines and/or Lyme Disease.   I write about my experience and what has helped me hoping that it might help someone else too.  If sharing my story about my implant and my lyme diagnosis after 19 years of chronic daily migraines helps one person then I have met my goal.  

My conclusion:

  • When someone sends you a suggestion you should just accept it as a nice thoughtful gesture.  You have the right to decide if you want to try it but you do not need to send your conclusion back to that person.  In fact, don’t send anything back at all but a thank you.  
  • If you are not open to eastern, natural, alternative or non-conventional medicine that’s ok because it’s your choice.  But don’t dismiss anyone that uses a treatment you don’t want to use.
  • Try to keep an an open mind to different treatments and don’t tell others their treatment is wrong when they have said it has been helpful to them. Instead ask questions about it to learn more.
  • Don’t believe everything you read on the FDA, CDC or other government medical websites.
  • STOP JUDGING TREATMENT CHOICES

It’s not my fault I have Lyme Disease

It’s not!  It’s really not my fault!  I don’t even know how or when I got it.  But I feel like it is my fault because I have a disease that most doctors don’t believe exists.  It’s not my fault that doctors are uneducated in Chronic Lyme Disease or Post-Treatment Lyme Disease, Co-Infections and all the other things that come with it.  But it’s really not fair to treat someone so poorly because they have it.  I would be treated so much better if I had Cancer.  Lyme Disease is much worse than Cancer!  You are thinking,…NO SHE’S CRAZY!  But it’s true.  You CAN die from Lyme Disease.   Yes, that is true.  It’s a scary disease.  So let’s compare Breast Cancer to Lyme Disease.

American Cancer Society   – The American Cancer Society’s estimates for breast cancer in the United States for 2016 are:

  • About 246,660 new cases of invasive breast cancer will be diagnosed in women.
  • About 61,000 new cases of carcinoma in situ (CIS) will be diagnosed (CIS is non-invasive and is the earliest form of breast cancer).
  • About 40,450 women will die from breast cancer.

In 2013 the CDC updated it’s statistics stating that they now estimate over 300,000 new cases of lyme disease each year.  And those are just the reported cases.  Unfortunately, due to the lack of education of medical doctors thousands and thousands of people are misdiagnosed.  Check out these links:

LymeDisease.org

CDC

Bay Area Lyme Foundation

The number of people that die from Lyme Disease is not clearly known because most cases of Lyme are misdiagnosed as something else like, Fibromyalgia, ALS, MS, RA, CFS, Alzheimers, Crohns, Psychiatric Disorders, any auto-immune disorder and numerous others diseases.  That’s why it’s called The Great Imitator”  Check out New York Times 1993,  Under Our Skin Article 2012,  and see Dr. Horowitz, MD  and many other books, books and more books.

If I had Cancer no one would even think that I was faking the crippling pain and nausea.  No one would ever questions that I wasn’t suffering.  No one would ever think I was making it all up.  No one would treat me like an addict just seeking drugs.  Seriously, think about it.  No one!  Not Doctors—Not Friends—Not Family—Not Co-Workers—No One!  Have you ever doubted anyone when they told you they had or have Cancer.  No, I didn’t think so.  Have you ever doubted anyone when they got sicker while doing chemo treatments.  No, I didn’t think so.  That’s why Lyme is worse.  There is NO support!  There is only inadequate medical care and uneducated and unsupportive doctors.

So here’s to all those medical professionals and others who think I have something else besides Lyme. Or think that Lyme is easily treated.  Or think I make up this pain.

  1. I have been to numerous doctors before seeing a Lyme Literate MD
  2. I have had doctors rule out other things you think I have.
  3. No, the lab that did my lyme testing is not fake.
  4. I have spent a year educating myself about Lyme Disease and I know a lot more about it than you do.
  5. My pain is real!  I had a life and a career before getting daily migraines 21 years ago.  It’s not my fault my body is on fire and no one has figured it out yet.
  6. I have tried many daily drugs to lessen my pain and they DO NOT WORK so I need pain meds.
  7. I look fine to you because I fake it!  I lie about how I am doing because most people really don’t care when they ask “How’s it going?”  or “How are you?”  We all know that is just a common meaningless gesture.
  8. I am not an addict seeking drugs.  I am crippled and can barely walk without pain meds.  I feel like a “Walker” because I run into walls in my house because I am so feeble and ready to collapse most of the time.
  9. Because Lyme comprises my immune system I have many other illnesses but I still have LYME!
  10. Most treatments are not covered my insurance because the CDC determines treatment courses and they believe one course of antibiotics is enough.  Lyme is not easily treated and cured.  It’s complicated!

As you can see the number of reported cases of Breast Cancer and Lyme Disease are around the same each year.  But remember many cases of Lyme are not reported because they are misdiagnosed.  Have you read about Kris Kristofferson?

Here’s an interesting article that explains some of the controversy of Chronic Lyme

 Here is another good article about the controversy of Chronic Lyme

So to those medical professionals who still don’t think I have Lyme Disease, what do you suggest I do?

  • Do you think I should start over and re-do tests that came back negative?
  • Do you think I should just pick a diagnosis that fits in your box?
  • What do you expect me to do when I receive negative test results for the things you think I have?
  • What do you expect me to do when the pain is real and I’m told it’s not and that I need psychiatric meds?
  • What do you expect me to do when I am crippled with pain and no one will help me?
  • What do I do when the only tests that come back positive are for infections called lyme disease and lyme disease co-infections.

Medical Professionals:

  • Please get educated!
  • Please stop treating me like a drug addict.
  • Please don’t rule out Lyme Disease as a diagnosis for other patients and send them to a LLMD.  Don’t do the testing yourself.  You don’t know what you are doing!

I wish everyone could spend ONE day in my shoes to develop some compassion.  You would also begin to understand what fatigue and pain really is and learn that most days I feel like I am going to die.  Because I can tell you you have NO CLUE!

 

Beautiful Song by Marina Morgan 

Read some of the Myths of Lyme Disease

Lyme is a huge epidemic and the denial by our government is killing people like me.

I have Lyme Disease Educational DVD’s I am happy to lend to anyone interested

 

 

 

 

Punchy Jewelry slowing coming back

Sorry, Punchy Jewelry Fans but I’ve had severe crippling pain in my arms, hands, legs and feet and have not been able to make anything.

Hopefully soon!

Nash likes mommy happier!

Photo on 4-24-15 at 5.51 PM

Group Exercise Classes – from a former instructor

The article attached thinks  “indoor cycling could help better manage migraines”.  I agree exercising can help chronic pain but having loud music is really difficult when you have a migraine.  I was a fitness instructor for 14 years and had to reduce the number and type of classes I was teaching because I always had so much pain in my head.  I loved the indoor cycling but was constantly calling for a sub to teach my classes.  Have any of you tried Zumba?  I don’t know why but it is the class with the loudest music.  I love group classes but even with no pain in my head, I’m still sensitive to loud pounding music.  Some gyms even have disco balls or strobe lights in cycling rooms.  Why?  I wonder if the Swedish study in this article had the music lower for the patients.  Probably.

http://www.wral.com/indoor-cycling-could-help-better-manage-migraines/14479586/

Chronic Pain and Depression

When my migraines first started in 1995 I began experiencing depression.  I never felt depressed before that.  I had no idea at the time that most people with chronic pain have depression.  I went to my primary care doctor and got Fioricet for the pain and Prozac for the depression.

I remember the first time I took Fioricet. I had no idea it had caffeine in it.  It was such a nightmare!  It didn’t help my level 10 exploding head pain AND I was wide awake.  I didn’t even think of going to the emergency room.  I just remember crying.  [What is Fioricet?  Per drugs.com:  Fioricet contains a combination of acetaminophen, butalbital, and caffeine. Acetaminophen is a pain reliever and fever reducer. Butalbital is in a group of drugs called barbiturates. It relaxes muscle contractions involved in a tension headache. Caffeine is a central nervous system stimulant. It relaxes muscle contractions in blood vessels to improve blood flow.]

I remember Prozac too: [Per drugwatch.com:  Patients taking Prozac may experience a host of side effects, including sexual dysfunction, dry mouth, nausea, headache, diarrhea, nervousness, restlessness, agitation, increased sweating, weight gain, insomnia and drowsiness.]  Strange how so many drugs have headaches as side effects.  I only took it for a few months and then switched to Zoloft.  [Per drugwatch.com:  Minor side effects of Zoloft that typically decrease after the first or second week of use include:, Nause, Diarrhea, Weight loss or gain, Increased sweating, Dizziness, Sleepiness or insomnia, Tremor, Dry mouth, Headache, Restlessness, Suicidal Thoughts, Sexual Dysfunction.  I didn’t stay on Zoloft very long either.

So if you are feeling depressed from all the head pain or just in general.  YOU ARE NOT ALONE

Check out NAMI, National Alliance on Mental Illiness.  

http://www.nami.org/Learn-More/Mental-Health-Conditions/Depression/Overview

It’s time to learn about occipital and supraorbital nerve stimulators for migraines

Sign up for a webinar!!!

Reed Migraine Center, Dallas Texas

http://reedmigraine.com/webinars.php?lt=39

New Migraine Awareness Jewelry from Punchy Jewelry

50% of proceeds donated to Miles for Migraine on aftcra.com

Punchy Jewelry

IMG_1344 IMG_1341 IMG_1349 IMG_1353

Acts of Kindness to Perform for People with Migraines

This is awesome!

Things to help when someone you know has a migraine.

Believe-Drive-Movie-Kids/Pets-Comfort Pack-Cook-Errands-No Perfume-Tea-Shop-Send Card

Continue reading “Acts of Kindness to Perform for People with Migraines”

Migraine Survivor Tips

ICE   I bought my Migra-Cap a couple of years ago and I love it.  I found it at  www.migracapusa.com.  Mine is purple, the  migraine awareness color.  I don’t make money off of this I just wanted to share because I use it a lot.

Lavender I love the smell of lavender.  It’s so relaxing!  I have a roll-on for my temples and a hooty owl that I microwave.  I found the cute owl at Home Goods/TJ MAX but they do sell them online .  I also make my own shower fizzies.  I found an easy recipe online to make them.

Ginger  My house is always stocked with ginger which helps with nausea. Ginger ale and ginger beer (non-alcoholic) are my go to drinks.  I also have ginger root tincture for quick effect. Just put some in a little water and drink.

Peppermint Mints also help with my nausea.