P.O.T.S.; my new struggle

   Wake up, dizzy again..."fun, this is going to be a great day" I think to myself. Walk to the bathroom lightheaded.  Stumble my way into the kitchen...grab something quick and healthy.  Shovel it down so I can take my salt tab.  So I can start my big mission for the day...building fluids. 

   Unfortunately, this is very familiar to people who suffer from P.O.T.S. (Postural Orthostatic Tachycardia Syndrome).  And this is just the tip of the iceberg.  A lot of the time people don't take this condition serious.  Even though it causes a long laundry list of symptoms, from sever to minor (I realize there are worse conditions out there, and thank the lord that I don't have any of them, yet).  I really wanted to sit down and write what it's really like living with P.O.T.S. but I found it extremely difficult. I just couldn't do it justice, so instead I thought I'd just give a brief description.  

   Living with P.O.T.S. can be very difficult, it's like being trapped in your own body unable to really control it.  And that is very scary to me, and probably to most people.  It feels like your body is an airplane and the captain and co-pilot left the cockpit and left the plane on automatic pilot.  Which makes simple daily activities nearly impossible at times, (you do have your good days and your bad days),  not being able to shop at a store, or get together with friends and family.  It definitely has affected the social aspect of my life, but thanks to a few people who have stuck by my side,  have accepted me. Since you don't have obvious signs of a problem people don't take you serious. The symptoms I have the most problems with would be, dizziness; lightheaded-ness; mental fog; memory issues; feeling like I am going to pass out; and weakness, (might I add all the peeing I do!  I feel like I should go into the toilet paper business!).  (It's almost worse than having migraines).  I have yet to find a helpful medication, (having only tried one; stated in my last post "new year, new med, new me").  I am hopeful that I will find something that will help me with symptoms, since there is yet to be a cure for P.O.T.S.  I take one day at a time, and focus on the positives.              
   


 

        
            

   

A penny for your thoughts

   Do you think migraines should be considered a disability?

New year, New med, New me

    At the beginning of December I was put on a new medication for my P.O.T.S. and I am pleased to announce that so far it's helping! 

   Being on the botox, keeping my iron and vitamin D levels up, and doing a workout routine that helps my core, back and neck (not like a hardcore workout, but one that gets me moving and helps me not to lose muscles).  This has helped a lot with the chronic migraines but as far as the daily headaches I couldn't find really anything that helped.  But I did notice that when my P.O.T.S. was better, my headaches were better.  So when it was time to see my neurologist, I mentioned it to him.  "It's not so much the migraines that are keeping me from doing things, the botox has helped with that.  But now it's the P.O.T.S. that's keeping me from participating in life".  He decided to put me on another form of salt tablet, in addition to my current salt tab (thermotabs).  It's called "Fludrocortisone", It is a form of steroid.  It is helping me be able to do more things, like be out in public without feeling like I'm going to pass out, but I still have my good days and bad days.  I do still have hope that one day, soon, I'll be able to do everything I want to do without the chain and ball of migraines or headaches or the symptoms of P.O.T.S.  For those of you still out there struggling, don't give up!  Good things are coming your way, just remember, it takes a little poop in order to grow beautiful flowers, (as our dear friend kandee Johnson would say).          

Different types of headaches

   I know I've talked about a few different types of headaches in the past but I wanted to put together a list and brief description of different types of headaches that I've come across (through the web and in books). 

• Acute/Cough/Cold Headaches= are from respiratory or sinus colds, exertion from coughing or blowing your nose.  

• Caffeine Headaches= come from caffeine withdraw or from drinking too much caffeine.

• Chronic Headaches= are categorized as a constant continuous headache that usually recur daily.  

• Chronic Progressive Headaches= are described as inflammatory headaches that get worse and happen more often over time, (is also one of the least common types of headaches).

• Cluster Headaches= are described as a severe pain located behind an eye or in the eye region without changing sides.  They can occur one to three times per day during the "cluster" period, which can last up to two weeks to three months.   

• Exertion Headaches= come from too much physical activity.

• Hangover/Dehydration Headaches= stem from not having enough fluids in your body.  You also can get headaches/ migraines from the chemicals in alcohol. 

• Hormone/Menstrual/Pregnancy Headaches= come from changes in the hormone levels, (menstruation, pregnancy, menopause).

• Hypertension Headaches= are due to high blood pressure, this happens when your blood pressure is elevated. 

• Meningitis/Encephalitis Headaches= in meningitis, the membranes that cover the brain and spinal cord become swollen or inflamed.  And in encephalitis, inflammation of the brain caused by viral infection, thus causing headaches.

• Post Traumatic Headaches= are from an injury/injuries to the neck and or head (like a concussion). 

• Rebound Headaches= come from changes in medications, or from caffeine. 

• Sinus Headaches= are described as pain in the cheekbones, forehead, and bridge of the nose, worse when bending over.

• Spinal Headaches= are headaches that develop after a spinal tap, about thirty percent of patients end up with one, the headaches are due to spinal leakage (worsening pain when sitting up).   

• Tension Headaches= are one of the most common types of headaches, there are two types; Episodic and Chronic.  Episodic, occur less then fifteen days per month, the pain is mild to moderate. band-like effect, pain is in the front, top or sides of the head.  Begins gradually often occurs in midday and may last thirty minutes to several days.  Chronic, may vary in intensity throughout the day but almost always is present.  Also in the front, top, or sides of the head.  And they come and go over a prolonged period of time.  

• Tumors/Organic Headaches= are an abnormality in the brain or skull  (Benigh or Malignant brain tumors, brain aneurysm, hematoma, brain abscess, brain infection, cerebral hemorrarige).  These are less than five percent of all headaches.  Symptoms that could be a red flag, a sudden sharp, intense or severe pain (especially if you never or only occasionally have headaches), sudden lack of balance or falling, confusion, inappropriate behavior, seizures, or difficulty speaking.  

Note that I am not a medical doctor, and if you have concerns about your headaches it's always best to get a professionals' opinion.  
  

      

  

Quick update

   So I recently got some dental work done and...Oh boy, let me tell you it is not fun!  I've had problems in the past with getting novocaine and it causing issues with my migraines, because it restricts the blood vessels.  So when I had to get additional work done I asked if there was anything else that wouldn't cause so many issues with my head.  I tried a "cousin" if you will, called lidocaine, and it's supposed to have less side effects.  For me, it was the same as taking novocaine.  I ended up with a migraine that lasted about two and a half to almost three weeks...fun.  I'm not sure if it would be more beneficial to others but I almost think it gave me a worse migraine because I get botox injections.  I did call my botox doctor and he said it shouldn't effect or interact with the botox but I have a feeling it does.  Because when they shot up my gums I could feel the lidocaine shoot up into all my nerves (I know that sounds kinda funny).  After the lidocaine wore off, which was about five hours later, I immediately felt a migraine coming on.  I had pain shooting up the side of my head and along with that I got sensitivity to the touch.  Luckily it did go away but, as a warning to other people who get botox injections be aware with other things that interact with your botox.  Especially if you're getting something else shot into your nerve endings.  So in closing, be careful because even if your doctor says nothing should interact with botox or medications, in general, that doesn't always mean it wouldn't.     

                       

How to tell the difference...

  
   Alright, so I know it may seem simple to tell the difference between a migraine and a really bad headache but it may be harder than you think.


   Believe it or not, sometimes after a period of time or if you're getting treatment for your migraines, they tend to switch up their game.  Which in return they maybe harder to distinguish.  You may think that because you have  head rippling pain, that it's a migraine, it very well could be, or you just have a very intense headache.  There are a few pretty easy symptoms that always go hand-in-hand with migraines.


   Anytime you have sensitivity to lights or noise, that is the key signs that you do in fact have a migraine.  Some people have auras before a migraine hits some people don't, some people start out not having auras and then have them later on in life, of vice-versa.  I know that with a migraine you usually have unbearable pain, but that can change as well, especially if you start some type of treatment.  For example, I would always know when I had a migraine because I would have excruciating pain along with nausea.  But after I started my treatment with Botox, I would have a hard time distinguishing the difference between a migraine and just a regular headache.  I wouldn't get the nausea that I always had, and the pain was somewhat tolerable.  I finally came to realize I was having more of them than what I thought after talking to the doctor.  It is normal for your migraines to change, but it is also very important to talk to a neurologist about it, because it could mean other things.  Just make sure you pay attention to your migraines and headaches.  Take care of yourselves and best wishes!  


P.S. sorry for the delay, my computer went haywire on me...technology.  But the good part is, is that it's up and hummin' now.               


  


  


  

Helpful tips And tricks

   Okay, so I know I've talked about some of this stuff before but I thought it might be helpful to put it all in one place.  I've made a list of things that have helped others (including me), with their migraines.  Before we get into all the fun stuff I would like to warn you, some of this might help some of it might not.  I would also suggest talking to a doctor before trying some of these.  Now that I've warned you, let's get going! 

   The first tip and maybe the biggest is to make a diary.  Before you start to panic, I'll say this, you really don't need to put much thought or time into it.  I found that the easiest way was to jot down a few descriptive words during and BEFORE your migraine.  Don't forget the time!  Is it worse in the morning, evening or in the middle of the day?  Did you get in enough water, food, or sleep?  What were you doing when you noticed it coming on?  Where is the just of the pain located?  Did you do something different that you normally do?  I only recorded these things for about 3 migraines, then I started to get the hang of it and didn't really need to write it down.  The biggest thing here is to PAY ATTENTION to your body!  Below I've made two list's, "make em' better" and "make em' worse".  (Remember, these list's may or may not help you). 


   MAKE EM' WORSE

• not enough water, food, or sleep
• lacking vitamins
• out of whack hormones-ladies
• food allergies-dairy, gluten, sea food, peanuts etc.
• allergies in general
• barometric pressure
• air quality
• too much sugar or not enough
• too much red meat
• other issues-tummy, heart, sinus, ear, etc.
• too much or to little caffeine
• vision/glasses
• stress

   MAKE EM' BETTER

• water, food, sleep
• vitamins-multi
• vitamin D=lacking can cause worse pain, magnesium
• iron-ladies or if you've lost a good amount of blood due to an accident
• balanced hormones
• barometric pressure-for me, when I go to waterfalls I hardly have a headache
• air quality-for me, getting out of the cities helps
• genetics-if you can, check your genes, have any other family members suffered from migraines
• acupuncture-I'd suggest going to someone who has practiced in Chinese acupuncture, it can be pricey
• caffeine-sometimes if you get a shot of espresso or have a medium coffee at the beginning of a migraine it can help
• vision-for me, contacts are less irritating, and if you're on the computer for too long that can effect your migraines, for every minute you stair at the screen take that same amount in seconds to look at something far away
•  ibuprofen-in small amounts, and use it wisely
• massage-again can be a bit pricey but worth it
• ice packs-using one when you have a migraine can be helpful but I'd suggest using a gel one or a soft one and make sure its not too cold

   I'm sure there are much more things to add to both these list's but this is what I've noticed.  These have helped me and others I've run across.  I hope you find this helpful!  Have a wonderful day, and keep smiling!