Mastocytosis and mast cell activation syndrome: What are the nighttime solutions?

Diseases with numerous and varying symptoms, mastocytosis and mast cell activation syndrome (MCAS) can particularly lead to redness and sensations of heat, hot flashes, sensations of electric shocks, joint pain, and musculoskeletal disorders.

When regularly facing these symptoms, it becomes very challenging to get a restful and restorative night’s sleep: sleep disturbances are added to the many symptoms mentioned.

We recently received a testimonial from Clarisse Péan, who uses the Climsom cooling mattress topper to relieve her mastocytosis symptoms. With her consent, we have decided to share her testimony.

As Clarisse is the co-President of Assomast, the French Association for Patients with Mastocytosis and Mast Cell Activation Syndromes, we took the opportunity to learn more about the disease.

Better Understanding Mastocytosis and Mast Cell Activation Syndrome

According to the definition provided by the European Competence Network on Mastocytosis, mastocytosis is “a disease characterized by abnormal expansion and accumulation of mast cells in the skin or internal organs, or both in the skin and internal organs.”

Mast cell activation syndrome is “a recurrent severe reaction of the body to certain mast cell activators that trigger a massive release of mediators from these cells.”

The symptoms of both conditions are very similar, and many treatments are common to both diseases.

To learn more, we asked Clarisse Péan, co-President of the Assomast association and someone who deals with mastocytosis symptoms herself, a few questions.

How would you define mastocytosis?

I would define mastocytosis or mast cell activation syndrome as complex conditions to manage because the symptoms can vary greatly from one moment to another, just as they do from one person to another.

Indeed, depending on where in the body the mast cell degranulation occurs (which can last from several seconds to several days or even longer), the symptoms are different: redness and a sensation of heat (commonly referred to as a “flush”), hot flashes, itching including at night (which can disrupt sleep), hives, sensations of electric shocks in a limb, as well as more generally neurological, gastrointestinal, cardiovascular, respiratory, urological, ocular, musculoskeletal issues, and more.

Personally, which symptoms do you have to deal with?

For my part, I have a very symptomatic form of the condition, with certain symptoms fluctuating according to the time of year. For example, in winter, I suffer from hot flashes and sweat excessively, whereas in summer, I sweat very little, or not at all.

My nights are also very different in winter and summer: in winter, I sleep a lot, sometimes excessively, with very heavy sleep. In summer, especially when it’s very hot, I can’t fall asleep without sleeping pills, and my sleep is always very light.

What are the current treatments available?

Currently, there are mainly symptomatic treatments for the disease. Depending on the affected area, the patient will take medications typically prescribed by specialists dealing with the involved organ.

For example, a patient with bladder and eye involvement will be monitored and treated by both a urologist and an ophthalmologist, in addition to their follow-up with a hematologist or internist.

Some innovative medications are being tested as potential disease-modifying treatments, but their use is not yet widespread. Thus, the effectiveness of drug therapies varies significantly among patients.

The Climsom Cooling Mattress Topper: A Solution for Better Nights

If you are looking to regulate your body temperature at night for better sleep, the Climsom cooling mattress topper can help, as testified by Clarisse:

I have had the mattress topper for almost a year. In the summer, I use it whenever the temperature is over 25 degrees. Since it keeps the bed cool, I fall asleep faster and sleep longer. I hesitated for a long time because of its high cost, but I haven’t regretted it because it is really useful, even indispensable to me.

The Climsom cooling mattress topper allows you to choose your temperature to the exact degree to relieve your symptoms. Depending on the model, the temperature can go as low as 15°C (Climsom Intense). To use it, simply pour water into the thermocontroller’s reservoir and select your comfort temperature: Climsom takes care of the rest.

Imagine you want a temperature of 18°C (which is already very cool, considering the average body temperature is 37°C). Water cooled to 18°C will circulate through the mattress topper’s silicone tubing —so fine you won’t even feel them! — to cool the surface of your bed. You will then experience a soothing sensation of coolness that helps regulate your body temperature and alleviate the excessive heat symptoms associated with mastocytosis.

Recognized for its analgesic properties, the cold will also help relieve any joint pain.

It is also possible to set the Climsom up to 48°C, providing a welcome warmth to help relieve musculoskeletal pain that may occur.

I also use it occasionally in “warm temperature” mode when I have diffuse musculoskeletal pain. The only drawback I’ve noticed is the noise from the unit connected to the mattress topper. I place it outside my bedroom (I had to buy an extension cord for this*) and use foam earplugs that are readily available. The person sleeping in the same room is not too bothered by the noise, but it could be an issue depending on individual sensitivity. In any case, for me, the benefits of the mattress topper far outweigh the notable inconvenience of the noise.

*there is a 2-meter extension cord that can be added to the included flexible hose for those sensitive to noise.

Which mattress topper is right for you?

	Climsom Personal	Climsom Intense
Dimensions	Standard size: 70 x 190 cm / 27 x 75″	Reduced size: 70 x 100 cm / 28×39″
Composition of the mattress topper	Soft fabric mattress topper	Mattress topper with a “soft” fabric surface and an “intense” surface
Minimum temperature	18°C / 64°F	15°C / 59°F
Maximum temperature	48°C / 118°F	48°C / 118°F
Warranty	2 years	2 years
	Learn more	Learn more

Regardless of the model chosen, each pack includes:

• The mattress topper to place on your bed, between the mattress and the fitted sheet
• The thermocontroller to place at the foot of the bed, allowing you to set the temperature precisely
• The connecting hose to link the two previous components
• A remote control with batteries for adjusting the temperature without leaving your bed
• A French instruction manual and a drainage key

Would you like to try the Climsom in the comfort of your home?

Feel free to take advantage of our 30-day Satisfaction Guarantee: you automatically have 30 days from the receipt of your Climsom to test it and see if it relieves your symptoms. If it doesn’t, simply let us know and return it in its original packaging, with all accessories, for a refund.

Good to know: shipping is free for all orders, and our customer service is available to answer your questions and provide advice (non-premium number: we are located in Nantes).

Cooling Pillow Covers: The Affordable Solution

These cooling pillow covers will help regulate your body temperature with their self-cooling properties.

Made from gel (Coolpad XL Gel), foam and water (Coolpad Mousséo), or crystals (Coolpad Crystal), they all share the ability to absorb your body heat, providing you with immediate, soothing coolness.

Good to know: Although the cooling pillow covers work perfectly at room temperature, you can place them in the refrigerator or freezer for an even more intense cooling effect.

	Coolpad XL Gel	Coolpad Mousseo	Coolpad Crystal
Dimensions	65×50 cm / 25.6″x19.7″	51×30 cm / 20”x11.8”	45×45 cm / 17.7”x17.7”
Weight	1.8 kg / 4 lbs	2 kg / 4.4 lbs	1.6 kg / 2.2 pounds
Composition	Gel	Foam and Water	Mini-Crystals
Ready to Use	Yes	Must be activated before first use	Yes
Comfort	Soft	Plush	Firm
Foldable	Yes	No	Yes
In summary	The largest	The most plush	The easiest to transport
	Learn more	Learn more	Learn more

Once they are saturated with heat (after several hours), simply set them aside for about thirty minutes and they will be ready to use again.

If you want to use them throughout the night, it’s best to purchase them in bulk so you can alternate between them. Plus, you’ll benefit from better prices:

• Pack of 2 Coolpad XL Gel
• Pack of 2 Coolpad Mousseo
• Pack of 2 Coolpad Crystal